Julian Family

New Blog

2007-09-29T14:22:00.000-07:00

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

2007-09-26T08:03:00.000-07:00

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

2007-09-23T12:31:00.000-07:00

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

2007-09-20T10:44:00.000-07:00

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!

2007-09-13T07:02:00.000-07:00

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

2007-09-12T08:43:00.000-07:00

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

2007-09-11T20:03:00.000-07:00

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

2007-09-11T17:31:00.000-07:00

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

2007-09-11T10:26:00.000-07:00

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

One Year Pictures

2007-09-10T12:06:00.001-07:00

To see Max's one year pictures, go to

www.millersalbums.com

you'll either have to enter my email address: keljulian@hotmail.com
or event code: 17435WMAX
Click on view all pictures, then slideshow to see them bigger.

**UPDATE 9/10/07, 7pm**
Please lift up Amy Wihoites family in prayer. A link to her blog is on the right. She was in her 20's, married, and had a one year old son. She was diagnosed with leukemia a year ago. She passed away today after a long, hard fight.

1 Year Old! (Part 3: The Party)

2007-09-06T13:08:00.001-07:00

I worked on his 2 cakes till 2:30 in the morning. I was so sad to cut into them!

He was not all that impressed with my hard work. The cake experience brought him to tears!

Luckily, the cupcakes were a hit with the other kids!

His face in this picture cracks me up!

Daniel was showing him how his new 4-wheeler worked.

He wasn't being very cooperative with picture-taking. I'll have to get pictures from other family members, because the pictures I've got on here are the only family pics I've got.

Max and Zoe Grace
Having fun with his toy from Pa Pa.

He was dressed at the beginning of the party. I took his clothes off for the cake eating (which apparently I could have kept them on) and I really wish I had put them back on, because he's in just a diaper in all the pictures from the rest of the day. He was a little overwhelmed by all the people, but seemed to have a fun time after he warmed up a bit. He never did enjoy the cake, but that's alright. If we thought our house had been taken over by toys before the party, we were wrong. Now the house really is taken over! I don't know where to keep everything! It's still so hard to believe he's ONE! My, how our lives have changed in just ONE year! My friend Kim's little girl just turned one and I am stealing some very quotable words from her. Kim, you said it all too perfect! (She has a girl, so I'm changing it a tad) "Its amazing how fast a year goes by, how fast they change, how you get use to living on less sleep, how you keep learning even though we often think we just figured him out, how our wild nights now include making fools of ourselves to get a laugh, how we don't know what we ever did before him, how your heart can break when he has his first little cold, how I'd rather be no where else than with him, how one little boy can steal your heart instantly, and how life is so much more wonderful now with him in it. We realize he is a gift from God and we couldn't love anything more."

1 Year Old!! (Part 2)

2007-08-23T10:35:00.000-07:00

We celebrated Max's birthday at home last night. I made cupcakes with chocolate icing and he sure did love it! This video is kind of long & it's really only him sitting there eating, but I thought grandparents and aunts might enjoy it.

He's checking out his birthday card from Gran Gran and Papow.

The cupcake was kind of weighed down by the candle.

At first he wanted nothing to do with the cupcake, he was pushing it away and fussing. John sneaked a little bite into his mouth and he instantly changed from being unhappy to wanting more of this new, wonderful, sweet treat.

By the time he finished, cupcake was everywhere!

Here he is having a sweet and cuddley moment. These don't last long!

Kelly and Max, 8/22/06

Kelly and Max, 8/22/07

John and Max, 8/22/06

John and Max, 8/22/07

John, Kelly, and Max, 8/23/06 (I don't look great here, but the ones from 8/22/06 were pretty rough!)

John, Kelly, and Max, 8/22/07 (he was in no mood for pictures at this point!)

1 Year Old!! (Part 1)

2007-08-22T13:19:00.000-07:00

Today is Max's 1st birthday! I can't believe it. The past year has truly flown by and all the things that happened just one year ago still feel like yesterday to me.

Now that Max is one, here are a few things I want to remember about this age. He is:
*eating almost anything we put in front of him
*standing unassisted for a few seconds
*pulling up on anything and everything
*climbing over things
*cruising around furniture and anything that he can hold on to.
*he likes to play it safe and isn't too courageous
*he has started getting cuddley with us at times, putting his head on our shoulder and wrapping his arms around our neck. Makes us melt!
*talking lots of gibberish
*mocking us
*smacking his lips in a really funny way
*his favorite toy is empty Cool Whip containers
*crawls really fast
*he loves for us to stack blocks so he can knock them over
*he's scared of new things, like big new toys
*he walked last night holding one hand, but I don't think he'll be ready to walk independently for awhile
*he likes to be around people and doesn't want to be alone
*he points at everything
*trying to master drinking from a sippy cup

We've come a long way in a year! I have been feeling very sentimental and emotional thinking back to August of 2006. I may write about that more in future posts, but for now I want to focus on the joy of the occasion! We have much to celebrate and be thankful for!

We have a party planned for Saturday, but tonight we'll probably do a little celebrating at home. Max will never remember his first birthday, but John and I will probably never forget it. More to come later on the birthday festivities!

Playing with Max

2007-08-14T19:43:00.001-07:00

Last night we would stack blocks and Max would knock them down. The video/pictures are from that. He was cracking us up!

2007-08-09T09:01:00.001-07:00

This is one of his favorite books to look at.

First time to eat spaghetti

He's got a noodle stuck to his nose!

Babies needing prayer

2007-08-04T06:29:00.000-07:00

**Updated from a few days ago**

I've been meaning to post this for a while. The quads were born one day last week! Please keep them in your prayers. To see updates and pictures you can click on their link on the right.

Also, I have just found out about another child with leukemia. The baby's name is Garret and his mom is Michelle, I'm not sure of his dad's name and I'm not sure of his age. They attend a church of Christ in Wynne, AR. He doesn't have a blog that I'm aware of, but if he gets one I'll post a link. They will be at St. Judes. Please pray for this family.

I just got another email today (8/6) about a baby named Grayson, 1 1/2 weeks old who is in the NICU in Nashville. From what I understand, he seemed perfectly healthy, then he started having numerous issues. They are testing him right now for metabolic diseases. There are over 1,000 possible metabolic diseases. Please pray that Grayson does not have one of these, that the doctors will find out what the problem is, and that Grayson will return to good health soon.

Pictures of Max coming soon!

11 Months

2007-07-24T14:16:00.000-07:00

Yet another month has flown by and yet again, I can't believe it! The next time I post a month update, we will be celebrating Max's first birthday. I haven't posted a lot of pictures lately, so I thought I would post a few from this past month that make me smile.

I also want to write a few things he's doing these days so I won't forget. He loves to open and shut doors, but cries when he shuts it because he has either shut himself in a room and can't see me, or has shut the door and wants it back open. He loves to point. Not necessarily at anything specific, just points around. He can pick up food now and put it in his mouth (hallelujah) but prefers things with a cracker-like texture. Yesterday, for the first time, he picked up cooked carrots and ate the mess out of them. He also loves opening & shutting cabinets and drawers. This can entertain for several minutes. He is crawling really well and crawls more than scoots. I'll update this list (for my sake) as I think of things.

If you look close in this picture, you can see his teeth. He has 2 on the top and bottom that are all the way in, 2 more coming in on the bottom, and 2 more coming in on the top. It's funny and strange how they're coming in on the top. He has one in the middle and one on the side that are all the way in. I thought it was strange that the 2 middle ones didn't come in first.

This was taken when I was trying desperately to get Max to realize that he could use his hands to get food to his mouth. To all you moms out there, it is NOT, I repeat NOT a good idea to do this using blueberry applesauce (a suggestion from one of his therapist. Yes, I will blame her for my stupidity. She used chocolate pudding, it was my bright idea to try blueberry applesauce.). His face in this picture absolutely cracks me up and I love how his sweet feet are crossed.

Sweet baby. He likes to look out the window and watch his daddy work in the yard in the evenings. He'll sit there and say, "da da da."

This was taken on our 5th anniversary after we had been out to eat. What can I say, the boy loves his daddy and the daddy loves his boy.

This weekend at the reunion there were beautiful places outside that would have been great picture spots. Max turned 11 months on Sunday and as we pulled into the place where we were staying, I told John that we had to do his 11 mon. pics at some of these pretty places. Well, we tried. Max was not having it. I think in this picture he is thinking, "get that camera out of my face, lady." (no, this is not one of the pretty spots, this was just an attempt to get a pic for his 11 mon. bday)

So, we got home from our trip, and because Max was tired, I was tired, and I am completely out of creative ideas for taking pictures around our house, I put him in the same spot he was in for his 10 month picture. And it's not even a good picture.

John doing Max's therapy.

Not much new going on

2007-07-20T10:43:00.000-07:00

Well, I thought I'd do a little update, but sat down to write and realized there wasn't much new to write about! We've got a reunion with John's side of the family coming up this weekend that we're really looking forward to. John has a rather large family, so it's always fun to get together with them all. We usually only see most of them one time a year. This year there are 5 new babies (I think I'm remembering everyone) that weren't there last year, and 1 baby and 1 marriage on the way, so the family continues to grow. Max has met some of the family, but hasn't spent lots of time with any of them, so this weekend will be a good time for him to get to play with all his cousins and aunts and uncles. We're looking forward to it and will try to remember to post pictures.

Ethan

2007-07-15T16:06:00.000-07:00

Ethan urgently needs prayers. I am copying and pasting a small excerpt from his website. To see more, click on his link to the right.

Ethan is being sustained by a series of tubes and wires and for the most part will be unconscious for an undetermined amount of days and below is the visual proof. I know that 99% of the people that read this daily realize the intensity of this situation, but for the 1% that are still skeptical, look at the photo below. He is sedated to the point of being all but lifeless. The most we should hope for over the next few days is that he will wiggle some fingers or toes. But other than that, below is what he will look like all the time. The positive side to this is that they believe that my cells are taking over (engrafting), and that these are just some side effects. The prayer request list is way too long to list, so I will keep it simple. Pray for Ethan to be cured. Please pray for every organ, vein, and drop of blood in his body. PRAY THAT GOD WILL BREATHE A NEW HEALTHY LIFE INTO HIM!

A Few Updates

2007-07-10T18:49:00.000-07:00

Max and his girlfriend, Marissa...

...and her competition, his other girlfriend, Zoe.

While Max and I were in TN last weekend I had a few requests for an update, so I figured it was about time I did that. Things have been slower around here lately as far as me having time to get on the computer. I've gone back to work and because of that the computer is the very last thing on my mind. I still get on from time to time and check email and the blogs of the other children, but I don't take the time for much else.

As far as going back to work is concerned, I am very blessed to only have to work part time. I am also VERY blessed to get to stay at my school. Right now I am teaching summer school for a half day every day then I'll teach part time when the school year starts. It has, however, been harder for me than I imagined it would be. Max, oh, Max is fine. I don't think he even realizes or cares that I'm not there. He's happy as a lark. He gets to play with his Pa Pa every day. Me, on the other hand, well, I have become quite the control freak where Max is concerned, really since the day he was born. I do not have a "controlling" type personality in any other area of my life, so I have been surprised that I feel this way about him. I've had many mothers tell me this is normal, but I feel that I am anything but normal. After doing this job of mothering him for 10 months, it has been tough for me mentally to relinquish some of the responsibility of taking care of him. I don't know why, because I am completely confident that he is in GREAT hands with someone who loves him dearly. I don't think I could handle leaving him with someone other than family at this point and I'm blessed that Terry is willing and able to keep him and he comes to our home every day (nearly an hour drive), which is another blessing. All that to say, it's harder on me than Max. Enough about that.

Max is doing something new daily! He has just recently begun to do a little sign language. He knows the signs for "more" (like when he wants more food) and "all done." We've been working on these (plus a few more) since he was about 4 months old when we first started feeding him solids, so it's exciting to see him finally get a few of them. He waves, sounds like he says "by" and "hi" or something like that, points at things, holds his play cell phone or our phones to his ear like he's talking on it, can feed himself, can cruise a little, pulls up on EVERYTHING, says ma ma quite a bit, makes a few hilarious faces that I've got to get pictures of, nearly has 6 teeth, gives great hugs and still lots of kisses, he loves to be around babies and kids, he loves to explore the house, he is crawling really well and crawls more than scoots unless he is on the tile floor. He really is the greatest blessing in the world.

I hope all of you reading this have a very blessed week. Please take the time to check Amy's blog (the link is on the right). She has leukemia and could really use prayers. She usually tells what specific prayer needs she has. She's a little younger than me, 26, I think, and has a son that is 1.

10 Months

2007-06-22T18:29:00.000-07:00

Max is 10 months today! He has really started pulling up to standing a lot lately. When I go get him out of bed from naps he's usually standing and holding on to the side. My favorite thing that he is doing right now is giving lots of kisses. Sometimes we ask for them and sometimes he does it on his own. It's the sweetest thing.

Happy Father's Day!

2007-06-19T14:26:00.000-07:00

Wooo, I'm a little behind on my updates. It's been really busy around here lately. We had a very nice Father's Day weekend. We went out to eat with John's family on Friday night and spent the night with them. On Saturday we got up bright and early for a garage sale where I made a whopping $3.50. It so was not worth the trouble on my end of things! Terry and Jill said they had a lot of shoppers on Friday, but apparently, no one shops on Saturday. I bet we had 10 people the whole day. John just wanted to spend the day at home on Sunday (since it seems like we're constantly on the go) so that's what we did.

I feel so blessed to have such a wonderful father for my children. I always knew that John would be a great dad, but he has far exceeded what I imagined he would be.

I would also like to take a second to acknowledge our dad's. We hope they both had a wonderful Father's Day!

On a different note, yesterday when Max was at therapy, one of his therapist came out to talk to me. One thing led to another and she told me that her son had a grade 4 bleed on both sides of his brain. He was also a full term baby (but a twin) and was fine until he was 3 days old. He, like Max, began having seizures and spells where he stopped breathing, they did the CT scan and found the bleeds. Her son has very severe Cerebral Palsy. She said that she looks at Max, and knowing his birth history both from reading about it and experiencing almost the exact same thing with her son, she is completely amazed that he is doing as well as he is. Her son never sat on his own, never walked, can't talk, is in a wheelchair and will always be in a wheelchair. Basically, she is experiencing with her son what I think doctors were preparing us for in the beginning. Once again, it was a reminder to me of answered prayers. I know I've said it before, but John and I will never, ever be able to adequately thank each of you who prayed for Max and those of you who continue to pray for him. My heart feels like it will explode when I am reminded that because of the prayers of so many and our Heavenly Father's willingness to answer them, my son is experiencing health that he might not would have otherwise.

I got a card from someone yesterday and they shared this verse:

"In all our troubles, my joy knows no bounds." 2 Cor. 7:4

I love that.

Max's 9 month pictures

2007-06-12T06:17:00.000-07:00

To see Max's 9 month pictures,
go to: www.millersalbums.com
enter event code: 17435Wmax9months
click on: view all pictures (on the left)
click on: slideshow (on the left) if you want to see them bigger

He's making some very funny expressions in some of them. The cowboy boots and hat that are in some of the pictures were my grandfathers.

First Haircut

2007-05-30T13:56:00.001-07:00

Pre-Haircut

The Mullet

The ponytail

The Haircut

Post-Haircut

9 Months

2007-05-23T05:41:00.000-07:00

I cannot believe I have a 9 month old. He is looking less and less like a baby and more and more like a little boy. He tries so hard to pull up on things. Sunday he pulled up to his knees all by himself for the first time. That's a pretty big accomplishment! He likes to explore the house now, that's something he's just started doing in the past few days. Now when we leave the room he will sometimes play on his own for a minute, then try to find where we are. This to me is a very nice alterntative to crying until we come back in the room where he is! He is very curious and will study his toys, examining everything about them. His favorite toys right now still seem to be balls, those plastic multi-colored things that snap together and apart and kind of look like a snake, his leap frog stand up table and his jumperoo. The boy LOVES to jump. He still loves bath time. He HATES having his nails cut, nose wiped, and mouth messed with (like to look at teeth). I think he's getting some more teeth up top. It looks like one is breaking through the skin. He can clap and wave. If we start saying "patty cake patty cake" he'll clap his hands. He whispers a lot and mainly says "da da" when he whispers. He also likes to screech really loudly and I think he amuses himself with how loud he can get. It is funny to go in his room at night and see what kind of funny position he likes to get in while he sleeps. He loves sleeping with his soft & silky blanket and his deer and about 7 paci's. I have noticed that we're only down to about 3 in his bed now, so I don't know what he's done with the other 4 or so that were in there. We still like to go in his room before we go to bed and just look at him while he sleeps. He weighs 17 lbs 8 oz, a little on the small side, and is 28 inches long which is pretty average. He is still the cutest and most entertaining little thing we've ever seen. Last night I remembered that I hadn't taken any pictures on his 9 month birthday yet, so we took a few in his p.j.'s. I'll try and get more today or sometime soon.

Trying so hard to pull up on his toy basket

Sleeping Baby

2007-05-17T12:16:00.000-07:00

Mother's Day Weekend

2007-05-14T07:02:00.000-07:00

We took Max to the zoo on Saturday. I can't say that he was all that impressed. We thought he might love it since he likes watching Lucy run around the backyard, but the animals just sat there, so there wasn't much to see. I think he loved being outside and being pushed in his stroller though, so we had a really great day anyway. Before long he'll think it's fun.

We spent Mother's Day with John's family. We had a great time with lots of good food including yummy homemade ice cream.
Max had a good time being pulled in his stroller that his Pa Pa got him. He looked really cute sitting in it.

He especially loved it when John would pull him fast.

Some Updates

2007-05-10T14:57:00.000-07:00

Today Max had an occupational therapy evaluation and it just couldn't have gone better! Karen, the therapist, said that she saw nothing that indicated that he would have long-term deficits. She also said that the muscle tone problems he had early on have seemed to improve and he was able to do the most difficult range of motion with no problems and if he had muscle tone problems then he probably would not have been able to do that. She said many other positive things and for that we are so thankful. She said that because of his birth history she will need to continue to monitor him and reevaluate in 6 months just to be sure that everything continues to be on track.

A family from John's parent's church needs prayers. A baby boy named Kyler was born 8 weeks early and has a Grade 1 brain bleed (on a scale of 1-4, 4 being worst) on one side of his brain. I think this is fairly common in babies born really premature, but of course it is not common to the parents, so they need prayers. They are in the NICU now, probably with many of the same nurses and doctors we had. Most of you know, Max had Grade 3 and 4 brain bleeds, so this really touches my heart.

Also, baby Ethan's leukemia is back in full force. They really need lots of prayers. You can also go to his site to see how to become a bone marrow donor, which they are desperately in need of. There are donation sites being set up all over. I went to one at Harding this week and all you have to do is swab the inside of your mouth. Ethan has something that is very rare and there is not a match for him in the entire national database, he has a 1 in 2 million chance in finding a match, so it is urgent that people get out and get tested.

Neurosurgeon

2007-05-08T08:37:00.000-07:00

We just got Max's 6 month pictures back and this is one of my favorites.

John just built a fence around our back yard so we have been spending almost every night sitting out there. We put the exersaucer on the deck and let Max play. He loves being outside. He thinks our lab, Lucy, is hilarious. He loves watching her run around.

Neurosurgeon:
Last Thursday we had a follow up visit with Dr. Burson. I haven't really had a great opportunity to get on the computer, so I'm just now updating. We got a great report! Dr. Burson actually commented that it is amazing how well Max is doing. Dr. B has a son a week younger than Max and Max is doing more stuff (developmentally) than his son, who had no problems at birth. He said he looks like any other kid his age. He also commented that Max may outgrow his shunt. I asked if that meant we had the possiblity of getting it removed in the future and he said not necessarily. It just means that his body may decide to start working properly all on its own, the shunt would then quit functioning, and we may never even know that it happened. John and I didn't even know that this was a possiblity, so we left the appointment ecstatic about all of the great news. Like I've mentioned before, the shunt has always bothered me, it has the potential to cause problems his whole life, but once again, God has heard my prayers. However, like I said, we may never know if his body takes over the work of the shunt, so I will continue to pray that he has no problems with it, but I heard the reassurance that I needed.

In other Max news, he seems to have come out of his clingyness somewhat (dare I even say those words). He just started clapping on Saturday and he's doing something that looks a lot like a wave, but not always at the appropriate time. He makes high pitched squealing noises, says ma ma and da da a lot, and smacks his lips. Last night John was holding him and he kept saying, "da da da da da." I'm sure John loved it.

That's all the news I've got for now. He's napping, so I better take advantage of my time!

And We're Mobile!

2007-04-26T08:21:00.000-07:00

Life as we have known it for the past 8 months is over! Max followed me all over the house yesterday. He's still not quite crawling, but whatever it is he's doing, it gets him where he wants to be. There's a video from today at the bottom of the pictures.

Bath time is one of our new favorite times of the day. He's gone through spells where he either loves it or hates it, and right now he loves it.

Playing in his room. He hasn't quite learned how to pull up yet, but he's working on it and he tries.

A Few Pictures

2007-04-24T07:47:00.000-07:00

I forgot to take 8 month pictures until the very end of the day, so this is about the best I got on the 22nd. More to come later.

We caught him happily playing all by himself and had to take a picture of this rare moment! In the bottom picture he really looks like some of John's pictures from when he was little. I also don't think Max looks like a baby in this picture, but more like a little boy.

On our way back to AR we happened to be at the same exit in Memphis as my friend Amanda as she was headed to Nashville so we visited for a little while. I think the kids look like they could pass as brother and sister in this picture. Amanda got some really good pictures of our kids from a few weeks ago, I'll post those soon.

A Few "Firsts"

2007-04-22T17:31:00.000-07:00

Sorry, no picture or video, I'll try and get some up later this week. Max and I have been in TN for a wedding I was in this weekend. Today he had a few "firsts" that I wanted to be sure and write down so I wouldn't forget. Earlier in the week, he said "da da" for the first time. Not necessarily directed at John, but it was the first time he had made that sound. This morning, he said "ma ma" and 2x it REALLY seemed directed at me! I was so excited I teared up. He was sitting on the floor in my parents living room and he was crying and I was sitting on the couch and he looked right at me and said, "ma ma" and he did it again before we left for church. Not so sure that he connects that when he says that he's saying my name, but it was neat anyways. Then tonight, he was sitting on a pallet in the living room with toys all around him. Mom was beside him and I had just walked in the living room and sat about 3 or 4 feet behind him on the couch and he started crying (yet again) when he saw me. He turned his body around and kind of belly-flopped onto the floor and did something in between a crawl and a scoot and made his way all the way to me. Now, he has used his arms to pull himself across a slick, tile floor, but today he was using arms and legs together and was going across blankets and a rug, both of which he's never done! I would like to thank all of you who have continued to pray for his development and that he would suffer no deficits, because from what I can tell, he is pretty on track with other kids his age.

What was I thinking...

2007-04-11T08:08:00.000-07:00

when I said I had a laid back and happy baby most of the time??? I should have known to never, never, never let words like those come from my mouth. Here lately, it seems that our happy times are quickly turning into...

UNHAPPY TIMES!!!

Eating lunch

Having a super fun photo shoot with mom :) (okay, maybe I understand why he was crying)

Playing after bath time...

Is he going through a yucky phase???

Is he getting more of these...

his gums do look red and swollen.

Or is it simply because...

and I don't want her to get out of my sight! I do seem to be his all-time favorite person right now, which is understandable since we are together 24/7. But he would prefer for me to hold him all the time, which I can't and won't do, and he certainly doesn't want me leaving the room, which at times I just have to.

We do get the occasional happy and sweet moment...

as long as mom and/or dad are nearby.

We are thankful for the few and far between sweet moments that we get. I don't know if this is just a clingy phase that some kids go through, but I think it is safe to say that John and I will not miss it a lot!

***Please say a special prayer for Bill and Lisa as they are meeting with the pediatric cardiologist at Vanderbilt tomorrow. Please pray specifically that God will completely heal their baby's heart before he is born. "Now to Him who is able to do immeasurably more than all we ask or imagine, according to His power that is at work within us, to Him be the glory in the church and in Christ Jesus throughout all generations, forever and ever! Amen." Eph. 3:20-21, "Call to Me, and I will answer you, and show you great and mighty things, which you do not know." Jeremiah 33:3***

Happy Easter

2007-04-09T08:42:00.000-07:00

Max had a pretty good Easter. He got to spend the day Saturday with his Gran Gran and Aunt Kristin. Unfortunately, Gran Gran had to leave Saturday night to go be with her other grandbabies, but she and Papow will be back next weekend, and possibly Max's cousins, Annie and Daniel and his Aunt Karie and Uncle Kelly will be in town too. Sunday morning before church he got to see what the Easter Bunny brought him and he had a lot of fun pulling things out of his basket. Most everything went straight to his mouth. Good thing the Easter Bunny was thinking and got him some Gerber Puffs. I really wish I had a picture of his face when he put his first one in his mouth. He's had 1 cheerio once before, so this was pretty new to him. His face was hilarious. After church we went to Max's Nanny's and Pa Pa's house where he got a 2nd Easter Basket. We enjoyed a really good lunch, Max took an unusually long (3 1/2 hour) nap, we got to see the Cardinal's finally win a game, and we had a great visit.

Harper

2007-04-07T20:43:00.000-07:00

Sweet little Harper passed away this morning. I've been reading about her since November, when her illness began, and I feel like I know her and her parents, much like many of you, some of who I've never met, feel so close to Max. My heart breaks for her parents. These are her dad's words from this morning, "It was time for her to stop suffering and go be with God and when we think about it that way, its hard not to be jealous." I know God is giving them the strength right now to be able to think that way during such a time of deep sadness. Please pray for Zach and Haley and the rest of their family as they continue to live here on earth without Harper.

Prayers Needed

2007-04-06T08:07:00.000-07:00

**I just read Harper's latest entry. (Those of you from Maple Hill, she is Steve Hawley's niece.) She is in very critical condition. You can click on her link for the specific prayer requests her parents have listed and for more detailed info.

I wanted to post real quick about 2 families that need prayers. The first one is a woman I recently found out about, I think in her 20's, named Amy. She was diagnosed with Leukemia last summer. She was doing much better for awhile, but it recently came back and on Feb. 23 her doctors gave her 2 months to live. She is married and has a son, I think around the age of 1. I have added a link to her blog on the right side of my blog. She has an unwavering faith and an incredible amount of strength. The other is a family from my parents church. The parents are named Bill and Lisa. They are pregnant and recently had their 20 week ultrasound. They found out their baby has Hypoplastic Left Heart Syndrome (the same condition baby Gavin has). Their blog has not been created yet, but I added their name under the children needing prayer. I believe they will be creating a blog and I will add the link as soon as I get it. Thanks!

Amy, her husband and son

Blessed

2007-03-29T12:03:00.000-07:00

I've got a long post ahead. I'll just apologize now!

Have any of you heard about the church who's members are trying to go 21 days without complaining? They all wear bracelets and every time they complain they are supposed to move the bracelet to the other wrist. Go to www.acomplaintfreeworld.org or Oprah.com (she had it on her show yesterday) to read more about it. Our Wednesday night ladies class has been doing this. I admit, I haven't started yet but I really need to. I'm thinking about adding my own twist to it for myself and I'll write about that in a minute. In our class we are studying Numbers. I never in a million years would have thought that I would learn so much from Exodus, Leviticus and Numbers or that it would be so applicable to my own life, but I have and it is. It seems that every week a question is asked that reminds me of our situation with Max. This week one of the questions from our lesson was: What situation are you currently in, where despite God's special blessings for you, Satan has you focusing on the problem? I wish there was some way I could express how this applies in my life today! I know that I have many special blessings in my life. I have clothes, yet I complain that I want to newest, cutest thing (and honestly can't afford it, so I need to just put that out of my head :), I have a house, yet I complain that I want something bigger, with more land, we have food to eat every morning, afternoon, and night, yet I complain that it isn't good enough. Everyday it seems that I can find a way to let Satan have me focus on the negative. Well, the question REALLY hit home with Max.

Special Blessings from God for Max
*Doctors thought there was little possiblity Max would be fine, many prayed about it and HE IS FINE!!!
*Doctors thought he might have a metabolic disease, many prayed about it and HE DOESN'T!!!
*Doctors thought he might have a liver disease, many prayed about it and HE DOESN'T!!!
*He was tested for hereditary disease, many prayed about it, and HE DOESN'T!!!
*He was tested for a disease called homosystanaria (sp??) which would have not been good at all, and he doesn't have it!!!!
*Blood sugar was a major problem for him, many prayed and it got better!!!
*It was believed he might have cerebral palsy, many prayed, and if he does have it at all, it should be mild!!!
*We prayed for the blood in his brain to dissipate and it did!!!
*We prayed for normal, healthy brain tissue, and there is nothing to indicate at this point that it isn't!!!
*He has gone for 7 months with no seizures, even off of his seizure medication!!!
*Max had a low platelet count, many prayed and it went up to normal range.
*Additional brain bleeding could have occured in the first 10 days of life, many prayed and he had no additional bleeding!!!
*Doctors were concerned that Max was lactose intolerant - he isn't!!!
*There were concerns that the lenses in his eyes would not be where they should be, many prayed about the eye exam and his eyes looked great!!!
*He had clotting studies and protein tests done, many prayed that they would come back normal and they did!!!
*He was tested for thyroid problems, many prayed and these came back normal!!!
*Many prayed for surgery to go well and Max far exceeded the post-op goals
*I've prayed daily for nearly 7 months that he would have no problems with his shunt, and while we've had to check it out 2x, there has never been a problem!!!
*He can roll over
*He can sit up
*He can prop up on his arms
*He can eat
*He can hold a sippy cup
*He can laugh
*He can recognize his name
*He can recognize mine and John's voices
*Liane, his physical therapist, told me to baby-proof the house. She thinks he'll be on the move very soon!!!

This list could go on and on. I've looked through past posts and there is so much more that I could list.

Basically, what I am getting at is this, the future for Max did not look so great in the beginning. We were very unsure of how his body would react to the blood in his brain. Plus, there were many other problems that seemed to continuously arise while he was in the hospital. If you look up Grade 4 bleeds and Grade 3 bleeds, which is what he had, the outlook is very bad. Without God, we could be looking at a very different Max right now. We could be dealing with many, many, many health problems, both physical and mental. And the question from our lesson really made me think, am I as grateful for these blessings as I should be or do I let Satan cloud my view. Unfortunately, I have let Satan cloud my view. The things I focus on are: what kind of setbacks will he have when he gets older, will he have to be in special classes, will he walk funny, what types of problems will he encounter with his shunt when he is 5, 10, 25, or 50, why didn't God let that blood disappear just a little quicker so he wouldn't have to have the shunt. Do any of these things matter in the long run? NO! Didn't God tell us, "Who of you by worrying can add a single hour to his life?...Therefore, do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." These negative things are the things I focus on and because of that, I am not focusing on the NUMEROUS blessings and I am not finding as much joy in the blessings (like being able to hold a sippy cup) as I should be. So, if you've stuck with me this long, here is what my special twist is going to be with the no-complaint bracelet. Every time I start to worry or focus on the negative, I am going to switch the bracelet to the other arm. My goal is to never have to switch it, I don't have a time limit for myself, and to remember to have a very grateful heart. Yes, I will continue to pray that there will be no deficits, but God would know that was in my heart anyway. But while that is my prayer for Max's future, I hope to daily thank God for where he has brought Max to this day with an extremely grateful heart. My hope is that because of my eyes being opened to how I have been, I will no longer let Satan continue to cloud my view of how much God has blessed my child.

"Do not worry about anything. But pray and ask God for everything you need, always giving thanks. And God's peace, which is so great we cannot understand it, will keep your hearts and minds in Christ Jesus. Brothers and sisters, think about the things that are true and honorable and are right and pure and beautiful and respected. Do what you learned and received from me, what I told you, and what you saw me do. And the God who gives peace will be with you."
Phil. 4:6-9

Dt. 7:9 Know therefore that the Lord your God is God; he is the faithful God, keeping his covenant of love to a thousand generations of those who love him and keep his commands.

Dt. 32:4 He is the rock, His works are perfect, and all his ways are just. A faithful God who does no wrong, upright and just is he.

Ps. 33:4 For the word of the Lord is right and true; He is faithful in all he does.

Ps. 146:6 Blessed is he whose help is the God of Jacob, whose hope is in the LORD his God, the Maker of heaven and earth, the sea, and everything in them - the LORD, who remains faithful forever. He upholds the cause of the oppressed and gives food to the hungry. The LORD sets prisoners free, the LORD gives sight to the blind, the LORD lifts up those who are bowed down, the LORD loves the righteous. The LORD watches over the alien and sustains the fatherless and the widow, but He frustrates the ways of the wicked. The LORD reigns forever, your God, O Zion, for all generations. Praise the LORD.

Ro. 12:12 Be joyful in hope, patient in affliction, faithful in prayer.

I Thess. 5:24. The one who calls you is faithful...

Heb. 10:16-23 Therefore, brothers, since we have confidence to enter the Most Holy Place by the blood of Jesus, by a new and living way opened for us through the curtain, that is, his body, and since we have a great priest over the house of God, let us draw near to God with a sincere heart in full assurance of faith, having our hearts sprinkled to cleanse us from a guilty conscience and having our bodies washed with pure water. Let us hold unswervingly to the hope we profess, for he who promised is faithful.

7 Months

2007-03-22T20:25:00.000-07:00

This month has truly gone by with the blink of an eye. I wish that time would go a million times slower than it is. I am enjoying every minute of the stage that Max is in right now. His personality gets cuter by the day (I might be a little biased). He is an extremely relaxed and laid back baby - really pretty easy. People are always asking me if he's always as happy as he seems, and we are really blessed that we can honestly say that most of the time, he is. Some things he is doing:
~getting better at rolling over
~realizing that he can roll over to get closer to a toy
~hugging us when we hold him and clenching on tight to our necks
~a few times he has come at my cheek open-mouthed. I realize he's probably too young to be thinking that he's kissing me, but since I kiss his cheeks all day long, maybe he's caught on to that a bit
~he hides his head in my shoulder when he wants to play peek-a-boo. He'll usually keep it there till I or someone else says, "Where's Max" then he peeks out.
~laughs A LOT!! He gets really tickeled at the smallest thing. Sometimes he gets tickeled at himself and that is the funniest to watch.
~screeches really loudly
~reaches out for people
~watches us when we lay him down to bed and looks so far over his shoulder as we leave the room that it causes him to roll over
~He's very observant of everything around him
~Reaches for everything in sight and is very determined to get what he wants
~Scoots and pulls himself across the floor to get to toys (no where near crawling, only moves in a real small area)
~He always smiles and pays a lot of attention to John when he gets home from work, but yesterday he got really excited and was kicking his legs. His eyes were glued to John until he picked him up. It was like Max was thinking that he and John were about to do something really fun together and Max had been waiting for him all day. It was cute.
~He sits up really, really well and can play sitting up for quite a while.
~He can hold a sippy cup and get it to his mouth. He hasn't figured out how to drink from it yet.
~He is very much a mama's boy and looks for me when someone else has him. As long as I am in his view he doen't really care who holds him.

Today we went to Harding with Candice, her baby Marissa, Bridget and her baby Zoe. I tried to get some pictures of Max on the pretty campus, but he gets so distracted by everything around him that I can no longer get his attention to look at the camera. Today he thought the grass was pretty neat and it must have looked tasty because he tried to eat it.

This is one of his very favorite toys right now. It has a rattle on the inside and he shakes it so it hits the floor and just laughs and laughs.

I didn't realize how big Max was until he was by Zoe and Marissa. I honestly still think of him as being Marissa's size (on the right).

This was a picture of him laughing at himself. I have no idea what got him going, but he was cackling. I tried to get video, but of course as soon as I turned the camera on he was more interested in the red flashing light and quit laughing. If you click on this picture and make it larger you can see his 2 teeth really well (and his green peas from dinner smeared all over his onesie).

He played on the floor by himself tonight for nearly an hour. He started out facing the opposite end and somehow managed to turn himself around to play with the other toys. That's what I meant by him being able to scoot around. We sat and watched him for a good 45 minutes - no t.v. and very little conversation - just totally and completely entertained by this tiny person. I left the room and came back a few minutes later and he had turned back around to play with the toys on the end he started with. I had to do tricks just to get him to lift his head for this picture. I was just barely more entertaining than his toys.

Evaluation

2007-03-21T13:22:00.000-07:00

Thanks for your prayers. I think things went pretty well today and I feel good about things. We won't get a written report for awhile, but the therapist was pretty positive. Everyone at Easter Seals is drawn to Max! He grins and lights up at everyone who enters the room and he has a definite favorite, named Michelle, that he really flirts with. He can spot her from across the room and he gives her the cutest grins. I'll try and get new pictures up before long.

New Test

2007-03-19T10:24:00.000-07:00

I just got a call that Max will be having another evaluation on Wednesday at 1:00. It will test various areas of his cognitive development. I am only posting about this to ask you to please pray diligently for this, specifically that the evaluation will show that he is on target with other children his age. He has therapy before his evaluation and he will be observed during that time, so he needs to go good and strong for about 2 hours. I feel myself getting anxious about this already.

This morning I posted new pictures from our weekend. Scroll down to see them.

Day at the Lake

2007-03-19T07:58:00.000-07:00

We've been making our first lake-trip of the year around the time of my birthday since we were in college. We go down for the day and get a campsite, grill hamburgers and sit around. Boring to some, but one of our favorite ways to spend the day. So this was Max's first trip to the lake. Unfortunately, we seem to always choose the coldest weekend, so we nearly froze and spent most of our time trying to keep Max warm. We were also slightly unprepared and remembered a million things that we had forgotten to bring with us once we got there. We had a great day regardless!

tuckered out

2007-03-16T08:59:00.000-07:00

I must admit, sometimes I have wondered if I had been a better person, prayed more, read my bible more, would Max have been born without all the problems he had. Well, I was reading baby Ethan's website this morning and there is a song on there that his aunt wrote and scripture that goes along with it. I really like what is says and if you have time you might like to listen to the song. I don't have any idea how to link the song onto my site. Here's the verse:

John 9:1-3
Jesus Heals a Man Born Blind
As he went along, he saw a man blind from birth. His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?"
"Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life."

Here's a new picture of Max sitting and playing...something that doctors weren't sure he'd be able to do. Thank you, God.

2007-03-15T07:47:00.000-07:00

We saw a lot of family this past week that we don't see very often. Unfortunately, I didn't get as many pictures as I wish I had.

Granny and Granddad
One time my sister, Kristin, asked Granddad what he and Granny did to have such a good marriage for so many years. He told her they never grew up. I believe it - they flirted with each other, joked, and always had a good time together. I'm going to try and post other pictures on here of them soon. This ones not very good - it's a picture of a picture.

Max wearing Granddad's hat

My cousin Melissa with Max. She's expecting a girl in July. I'm not sure what kind of face Max is making in this picture.

2 of Granddad's sisters, Aunt Juel and Aunt Christine. Max had a great time playing with them.

Max's first 2 teeth (on the bottom). It's the best picture he would let me get. I don't know what it is with kids and their teeth - they never want their picture made showing them off.

Uncle Roy, Aunt Chris's husband, with Max.

Uncle Jim, my mom's brother, with Max.

6 Month Pictures

2007-03-11T14:13:00.000-07:00

To see Max's 6 month pictures, go to:
www.millersalbums.com
event code:17435WKJ
type in my email address: keljulian@hotmail.com and my first and last name. Click on view all then view slideshow to see them bigger. These were my favorites and it will be so hard to decide!!

Thanks for the sweet comments for my family. We appreciate them all.

Oh - Max has his first 2 teeth. They just broke skin 2 nights ago. Fun times!!

Granddad

2007-03-07T20:44:00.000-08:00

Last night, around 5:30, Granddad was met by Granny at Heaven's gate, we are sure of it. We have a good feeling that Granny had the coffee ready and that one of the first things out of her mouth was, "Where have you been?" I can just hear her saying it now. Then I'm sure they sat on the back porch drinking coffee, watching the birds and horses, and catching up over the past 4 1/2 years. I wish I could be a fly on the wall. We were fortunate to each get some time with Granddad yesterday. That time was priceless. We were also blessed to be able to be with him the entire time. We are experiencing such a loss at this time, but he is well and I know he couldn't be happier. He is in the best place of all, the place we are all longing for one day.

Monitor

2007-03-05T13:41:00.000-08:00

The heart/apnea monitor is now a thing of the past. The lady came to pick it up today and I signed off on it as being no longer needed. Please pray that we'll have peace when he sleeps at night.

My granddad isn't doing well. Max and I will probably head to Nashville to see him in the morning and John may be coming soon, too. Please pray for my family, especially my mom and her brother, during this tough time and please pray for safe travels. My sisters live 4 and 6 hours away and my cousins live in Michigan, which is a good 10-12 hour trip. Both my sisters and my mom have had wrecks in the last month (none of us has ever had a wreck) - they say these things happen in 3's so hopefully no more troubles on the road. And again, traveling without the monitor for 7 hours makes me nervous, so please pray for that as well. I'll update when I can.

A special visit and new things

2007-03-04T13:24:00.000-08:00

John's aunt and uncle came for a visit this weekend. They happened to be in town when Max was first transferred to the NICU, so they caught a brief glimpse of him then but haven't seen him since. Max was completely relaxed with them and enjoyed being loved on and held by them. They brought him a cute stuffed Easter Bunny whose ears flop up and down and he sings and it has brought many laughs to our little boy. Here are a few pictues...

Uncle Gerald must have had the touch because Max doesn't lean back in many people's arms like that. Most of the time he wants to be sitting straight up.

Uncle Gerald is extremely talented in making things out of wood and he made the shelf in this picture. I have 2 others in my house that he made and I love them.

Having fun with Aunt Marilyn.

Max has a new fascination - his feet and toes. Apparantly they look and taste like candy.

Another First - Max is mobile...kinda. He is rolling from his back to tummy. This was very slow-going at first, but he is a champ at doing it now. We will have to watch him super close now - he would have rolled right off the changing table at church this morning if I hadn't been standing there. No more leaving him on the bed for just a second. I have a few videos of this, but no pictures, not that you could really tell in a picture what he was doing anyway.

Quick Medical Update - His last download from his monitor came back normal! This is the first time he's had a normal reading, so that was fantastic news. This means that we will likely be getting rid of the monitor soon. I have some mixed emotions about this - yes, I am tired of getting wrapped up in the cords and tripping on them, but I feel so secure at night knowing that he's breathing. (I won't miss all the false alarms that have me running frantically to his room in the middle of the night AT ALL!!!) I imagine I won't sleep well for awhile. Luckily, my mom bought me a great monitor before Max was born that goes under his mattress that is supposed to be sensitive enough to alert you if your child stops breathing, so that gives me some comfort.

First Time with a Sippy Cup

2007-02-26T08:56:00.000-08:00

I realize most people do not care that this is his first time with a sippy cup. I'm posting about it mostly so that I'll remember what day it was. He really doesn't drink from it yet, just chews on the lid. He's pretty good about getting it to his mouth, though. He is quite the messy eater, so you can see his food smeared all over his face and bib in some of these pics.

6 Months ~ 2/22/07 (Trying Again)

2007-02-26T08:47:00.000-08:00

I don't know why these pictures aren't always uploading. I'm going to try one more time...

Max says, "Enough, mom. I'm really bored with all this picture taking."

6 Months ~ 2/22/07

2007-02-23T07:15:00.001-08:00

Getting Stronger Every Day

2007-02-21T13:28:00.000-08:00

Granddad

2007-02-17T05:27:00.000-08:00

Max and I are traveling to TN today to see my granddad. He's been in the hospital for nearly a month now (off and on) with some heart and lung problems. We haven't seen him since Christmas, so we want to get over there and visit and help out as much as we can. He's a pretty special guy to all of us. He just turned 86 this past November, but I always think of him as if he's about 65 or 70 because that is how he acts (he even still has his natural hair color). The other day he pointed to pictures of his great grandkids in his room and told his nurse that he had to get better for them. Please pray that he will have good health again and please pray for Max and I as we travel. I probably won't post anything new until we get back.

Granddad and Daniel last Christmas

Granddad and Annie

Happy Birthday, Annie

2007-02-14T13:05:00.000-08:00

Max's cousin Annie is turning 4 today. It is so hard for me to believe that 4 years ago today, I, along with the rest of my family, were standing in the hospital hallway anxiously waiting for the arrival of the first baby in our family. Annie has brought so much joy to all of our lives. She is the sweetest girl and we love her so, so much. I know that she, her brother Daniel, and Max will be big buds in a few years and Max will look forward to the days when he gets to visit them.

Annie helping make Max's quilt

The first time she met her new cousin.

Giving Max sweet kisses.

The three cousins

Prayer Request for Today

2007-02-14T08:22:00.000-08:00

I have a quick prayer request for today. Please say a prayer that Max will do well in therapy today. He normally cries almost the entire time we are there. It's really hard to watch and it's not very productive. He usually does fine with me when I do his daily therapy at home, but of course I'm sure I'm not as tough as Liane since I really don't know what I'm doing. Plus, it's a solid hour of really tough work, so it's just hard for him, and at home I can space it out throughout the day. He also has reflux which seems to act up during therapy. I tried something a little different with his routine today that hopefully will make it better. It's just getting to where I dread going because I know he'll likely cry for the whole hour. We also have been moved to therapy 1x week instead of 1x every other week. If you don't see this until tonight or later in the week, please just say a prayer for future therapy.

**Therapy Update**Well, he cried through all of therapy, but I'm hoping that this will eventually get better. Liane was really proud of his new accomplishment, prop sitting, and he did good with that today. Thanks for your prayers.

Look what I can do!

2007-02-12T12:12:00.000-08:00

We've tried sitting him up before and the physical therapist has worked on it some, but never before has he been able to just sit up like he did today. He can last for a few seconds and then topples over. He thinks it's fun when he falls.

So far so good...

2007-02-07T07:38:00.000-08:00

...as far as sleeping is concerned. For 3 nights he has nearly slept through the night. This is incredibly exciting for all in the Julian household. The crying seems to get less each night. His naps are even better during the day than they used to be and I attribute this to his good nighttime sleep.

Most of you reading this probably began this journey with us. I thought today I would share a little of my personal journey and tell you a little about what is on my heart. For 5 months I have not been myself and I'm glad that John loves me like he does because I'm sure I haven't been easy to live with. Last week I talked to a good, christian dr. who does not know me and does not know about Max and I told him our whole story, from my perfect pregnancy up until today. He asked me something that I had never thought about - he asked me if I thought I had grieved over the loss of an expectation. I told him I had cried but that usually when I do that it is over worry or frustration and when Max was in the hospital we cried because we thought our world had just fallen apart. He said it would be very normal and good for me to actually grieve. We had many expectations before Max was born. We expected to come home with our new baby in 1 to 2 days, we expected him to be healthy, we expected life to go on (of course with some changes) as it had before but even better, we expected the days following his birth to be pure bliss, we expected to not have to worry about his future developmentally, cognitively, and over-all health-wise any more than normal, etc. We lost all of those things. I think last night was the first time I actually grieved and the first time I was able to really tell John how I felt about everything that happened. Every night for the past 5 months I lay in bed and replay those first few days over and over in my mind. Watching Max turn blue the night he stopped breathing, watching my new baby lay there and have seizures in the nursery, handing him over to the flight nurse for his helicopter ride, seeing him lay in a bed covered with wires, iv's and tubes in a neonatal intensive care unit, sitting on our bed listening as Dr. Nestrude told us that there was very little possiblity that Max would be fine, the roller coaster of emotions that we went through for nearly a month in the hospital. The fact that for 38 1/2 weeks my baby had never been separated from me - I felt his kicks, his hiccups, he foot sticking in my ribs. And all of a sudden I was without my baby. I couldn't hold him all the time, there were days I couldn't even touch him, and at night I had to leave him. The shock, the pain, and the hurt still feel real today. Of course, along with the loss of what we expected, we gained things that far exceeded our expectations. I never in a million years would have dreamed that it was possible to love another human being in the way you love your child.

You may be thinking, "she should be happy, Max is doing good." Yes. I do have a lot to be happy about. We are blessed far beyond what we deserve. God answered many, many prayers the way that we hoped that he would. We have Max with us, unlike Parker's parents who lost him a month ago. God willing, Max will not require any more surgerys, unlike Gavin who had surgery on his heart on Monday. God willing, Max will not experience more seizures, unlike Harper who had a very, very scary episode last night. Why God chose to make Max progress as he has I may never know. And I am thankful and I praise Him. But it was good to grieve last night. I don't know if it's the last time I'll feel this way or not, but I am thankful to the dr. who told me that it was okay.

**After I originally posted this I checked my email and had a message about another baby who needs prayers. I will paste a portion of the email and add his link to the right so that you can check for updates.**

After a routine visit to the doctor's office for Ethan's eight week checkup, they found a lump and sent us to the hospital. After numberous tests, they have confirmed that Ethan has Leukemia. From all that we know, this is an extremely rare diagnosis considering that he has between a 1,000,00 and 1,500,000 white blood cell count, and he just passed with 2 month birthday. Please visit http://www.ethanpowell.com for the full details. If you would like to send a word of encouragement or prayers, please do so at prayersforethan@yahoo.com. We place our son's health in God's hands and ask for your prayers.

Sleep

2007-02-05T06:42:00.000-08:00

I have decided that I am going to do my best to let Max cry it out in the middle of the night from now on. This is what the pediatrician told me I should do and some friends and my sister (whose kids all sleep through the night) have suggested. I will say, this is hard for me because at 3 a.m. all I can think is that I want quiet sleep and if I just slide that paci back in his mouth he'll dose off for another hour or 2 before he wakes again. Well, last night before going to bed I fixed up the couch with blankets so that when he wakes up I can lay there and hopefully John can continue sleeping. (How he sleeps through the crying, I'll never know. But I'm happy for him that he can.) At 4:30 this morning I hear him stirring and whimpering and I laid completely still. I so did not want to move from my bed. After about 3 minutes, I never heard him again and he slept until 7 a.m. This is always exciting when this happens because it is so rare. I try not to get my hopes up that we have reached a wonderful milestone of sleeping through the night, but I find myself excited today thinking maybe this is it!

Please pray for baby Gavin today. He is having his 2nd heart surgery sometime today. Also, please continue praying for baby Parker's family. It has been right at a month since he went to heaven.

Max's First Snow

2007-02-01T12:48:00.000-08:00

5 month pictures

2007-01-29T23:34:00.000-08:00

My sister was here the other day and took some really good pictures of Max. These are a few of my favorites.

If you look really close you can see his dimple in his left cheek in this one.

Two thumbs are better than one!!

Max meets the Howards

2007-01-27T14:19:00.000-08:00

Max got to meet his cousins Kalee and Jackson today. Too bad he cried during picture time!

5 month pictures

2007-01-25T06:50:00.000-08:00

Max was five months on January 22.

5 months old

2007-01-22T09:57:00.000-08:00

Guess who LOVES his cereal now! A few days ago he cried anytime we tried to feed him, yesterday John was feeding him and he couldn't get enough! He was grunting and had his mouth open for more before John could get it to him.

He's also found his feet (with a little help). I hold them up all the time trying to get him to notice them but today is the first time he's reached out for them and played with his toes.

Watch Out, Ladies

2007-01-20T09:03:00.000-08:00

Ladies Man

Emma Cate, Avery, Shelby, Marissa, Zoe...you better watch out. Max is quite the charmer!

The old Max...

2007-01-19T09:21:00.000-08:00

It appears we are on our way to getting our sweet, happy old Max back. Yesterday my sweet mother-in-law came and watched Max so that I could get some sleep. It didn't appear at first that he was going to separate from me, but eventually he did and did fine for a few hours. This morning John's dad came over and played with Max and Max didn't cry for me once. Ahhh, what a relief. I talked to a nurse from our pediatrician's office this morning and she said that the way he has been acting is consistent with how someone would act when being taken off phenobarbital. Thanks to Sue and Polly for suggesting that that could be the problem. I don't know why I didn't think to ask about withdrawl problems when I talked to them originally (or why they didn't tell me for that matter).

Shunt

2007-01-18T16:31:00.000-08:00

The shunt still seems to be working as it should. We are very, very thankful that it is not what is causing the change in Max. Maybe he's teething, maybe it's withdrawl from the phenobarb, as a few people mentioned, we don't know. It is exhausting worrying about every little thing with him. As my dad said, if he didn't have the shunt we wouldn't even be discussing how he's acting, it would just be a normal baby thing. Thank you for all your prayers today.

Chunky Monkey

2007-01-17T13:44:00.000-08:00

22 weeks

Do any of you moms have any suggestions for how to not let your kid scratch their face all up? Little gloves are out - they just make him mad and the therapist says it wouldn't be good for development. I can't possibly cut his nails any shorter. I'm afraid some of them are already too short. It seems that every day he wakes up with a new scratch on his face. You can see 2 in these pictures, but he has about 4.

Well, once again we have worries on our mind. We go in the morning to get Max's shunt checked out. He is showing some signs that there could be a problem, however, it could also be nothing. Let me just say, I am very thankful for modern medical technology, shunts, etc. Without the shunt, Max would have some serious, serious issues. However, shunts stink a little because there are no clear cut symptoms for shunt disfuntion or infection. There are things that would signal a problem, but they are all things that could have nothing to do with the shunt at all. I was just telling a friend yesterday that for the rest of Max's life, we will have to worry everytime he gets a fever, throws up, or acts out of the ordinary for no apparent reason that something is wrong with the shunt. Max is usually a very happy baby. He smiles, laughs, plays and entertains himself, and will go to just nearly anyone very easily. He usually only cries if he is really hungry or really tired and I usually feed him or put him down before we get to that point, so very few tears are usually shed around here. For about the past week we have been seeing a very different Max. He cries constantly, he doesn't want to play, doesn't want to be put down EVER and is extremely clingy to me or John. When anyone else holds him he cries a river. He also wakes up about every 30 minutes to every hour at night which is making for a very tired and grumpy baby, not to mention mommy and he hasn't been eating well at all but that's not terribly unusual. (He just got over a cold and had his ears checked out today, so he's not sick that I know of.) So, last night I got to thinking that those are all signs that I have read about indicating shunt problems. Today at therapy we couldn't even finish the session because he was crying so much and Lianne (therapist) noticed trembling in the upper extremities which isn't normal for him and she mentioned possible shunt problems. So we called Dr. Burson (neurosurgeon) and we are going in to see him in the morning. Please pray that everything is okay with the shunt. The second thing that brings concern to us at this time is his monitor. We've gotten pretty comfortable with him being off the monitor a majority of the time (never when he is sleeping or in the car), especially if we are right there with him. But, today I talked to the pediatrician's office and they just got the report from the latest download. It said that there has been recent significant apnea and/or low heart rate episodes and to continue use of the monitor. Now, that being said, the monitor doesn't go off often, so I'm not sure what the deal is with that. Although it did go off 4 times in 2 days. Uuugghh. Just one more thing to think about. I guess we'll probably keep him hooked up a majority of the time until we hear something further. Anyway, with lack of sleep and all the crying around here, I'm feeling pretty discouraged and a bit worried. Please pray that the shunt is fine and that there will be no more apnea/low heart rate problems. I'll update when I know something.

More Laughing

2007-01-14T20:57:00.000-08:00

This is about 3 minutes of Max laughing. It's a bit long, but the cutest thing I've ever seen. Not much new to write about. Max is doing great - getting bigger and stonger every day it seems like. He seems to be making good progress with his at-home therapy sessions. We're getting a lot more laughs out of him, he loves standing up and looking all around him, he wants to be faced out where he can see people, he loves to play and he loves to be entertained by his mommy and daddy. His personality is getting really cute.

EEG Results

2007-01-09T12:47:00.000-08:00

We got the results from the EEG Max had a few weeks ago. As far as seizures go, the results were really, really good. It does not appear that Max has any potential for more seizures and that there is no true epileptiform activity. We are weaning him off of his phenobarbital and he should be completely off of it by the end of the week. I will love not having to give him that any more but will miss the security in it. The results were considered abnormal because the brain waves in the occipital and parietal areas were slower at intermittent times which suggests a structural lesion. The way that Dr. Westbrook explained this to me and the way I understand it is that the blood did something to that area of his brain. She said you could think of it kind of like scar tissue being left behind. Of course, we knew that there was the possibility of something like this, but it's not something you like to be reminded of. We don't know what this means for the future or if Max will even be affected by it in any way. We pray that he won't - babies brains are very resilient and can compensate in many ways - especially with early intervention. Dr. Westbrook did say that we need to continue taking things one day at a time and rejoicing in his daily progress. She said that he is developmentally ahead of many 4 month old babies she sees in her office and she had three 6 month old babies in the other day that all lacked skills that Max has already accomplished. We have a lot to be thankful for. Thank you for once again praying on Max's behalf.

More proof that Max does not look like his mommy

2007-01-03T09:11:00.000-08:00

John when he was Max's age

I do think Max is going to have dimples. Whether or not that is hereditary, I don't know, but I like to think he got something from me besides his fair skin!

Things I love...Things I do NOT love!

2007-01-02T11:09:00.000-08:00

Things I love...

I LOVE my bed!

I love my new jumperoo!!

Thanks, Daniel, for letting me borrow this cool toy!

I love my exersaucer!

Things I do NOT love...Rice Cereal - yuck!

I see what you're about to feed me and I'm not happy about it!

You're making me really mad!

Really, I don't want any more!

Whooo, finally they put the rest down the sink. I've tasted worse, but I have definitely tasted better!

There are new pictures in the December album.

Max laughing

2006-12-28T08:59:00.001-08:00

This isn't the greatest video ever, but it shows a little bit of him laughing. He was really laughing big and by the time we thought to get the camera he was near stopping.

4 Months

2006-12-27T10:53:00.000-08:00

I love my daddy!

We will do anything to get a laugh!

I laid Max down for a nap and thought I'd lay down for just a minute. I ended up napping with him for about an hour.

I love bath time!

Max turned 4 months on Friday, Dec. 22. I feel like I say this every month, but I really can't believe how fast the time is going. It was a year ago last night that John and I found out we were pregnant with Max and I can't believe all that has happened in just one year. We had his 4 month check up on Friday and it went really well. Dr. Westbrook seemed very pleased with how he was doing. She did several things that she does with all babies his age and I got the feeling that she thinks he did as good or better than most 4 mon. babies. One thing she said he did really well was hold himself up while laying on his tummy. We sure have worked hard enough on that! She also said that she knows that the therapist we are seeing are trained to see deficits, so she knows that Max must have some to even qualify for therapy, but that the deficits he does have seem to be fairly minor at this time. She was unable to tell a difference between the right and left side. The results from the EEG and the most recent monitor download were not back yet so she or a nurse will call with those when they get them. We are continuing the phenobarbitol and monitor for the time being.

After we left the dr. we went to the hospital to see one of our favorite nurses from the NICU - Margaret. It was so great to see her. She was amazing during our time there. She took such good, good care of Max and of me and John. We always felt like she (along with 2 other fabulous nurses) treated Max as if he was her only patient and like she would have treated him if he was her own. From there we went downstairs to get some coffee and lunch. Almost every day John and I ate lunch and dinner at the hospital and I usually got coffee from the Starbucks downstairs. On Friday I got my typical sandwich and I tried a type of fancy coffee drink that my dad had bought for me once while we were there. The coffee I probably would have gotten anyway, but I just wanted to taste the same food I had eaten for weeks and be able to enjoy it knowing that I now have a healthy baby. It was good and the coffee was better than I had remembered it. When I got my coffee Max and I took a walk in the front garden area of the hospital, the same I walk I took almost daily. I thought I'd write a few verses that are on the garden walkway. They continue to hold very special meaning to me now. There were others, but I can't find the paper I wrote them down on.

Proverbs 3:5 - Trust in the Lord with all your heart and lean not on your own understanding

Psalms 55:22 - Cast your cares on the Lord and He will sustain you; He will never let you fall.

Margaret thought Max looked really great. She commented several times that he is just perfect. We think so!

He is having a very fun week here in TN. We're making lots of good memories and trying to spend as much time with loved ones as we can since it will probably be awhile before we are back in this area again.
We do really miss John and are looking forward to seeing him in a few days. We missed his birthday yesterday so we will celebrate when we get back and enjoy having some good, much-needed family time just the 3 of us.

We hope all of you had a very Merry Christmas!!

Tennessee, here we come!!!

2006-12-22T12:49:00.000-08:00

We are about 8 hours away from being in the good 'ol Volunteer state and I can't remember when I've been so excited about going there! Max hasn't seen his gran gran and papao for a month and I can't wait for him to get there and play, play, play and soak up all of their good lovin. He'll also get to see his cousins and aunts and uncle, so it will be a great time! If only he knew how much fun he was about to have... I also can't wait to see my mom's Christmas tree and eat her good cookin.

Today was a great day and I really wish I had time to blog about it. I will write in more detail later. We had his 4 month check up today and besides me confusing my appt time, it went really well. I thought it was at 10:30 and it was actually at 9:40, but they were nice enough to squeeze us in. After that we went to the hospital to see one of our very favorite nurses from the NICU. This visit is what I really want to write about and maybe will be able to do that tonight or tomorrow. For now, I've got to hurry and finish packing/cleaning so we can hit the road.

EEG

2006-12-14T20:11:00.000-08:00

Scroll down for the update on the EEG. I'm not sure why that post showed up below the one that Karie did this morning.

EEG Prayer Request

2006-12-14T08:12:00.001-08:00

Just a quick request...Max is having his EEG this morning. While we won't know the results for at least several weeks, we ask you to start praying. First of all ~ Max has to be asleep for them to get an accurate reading. Please pray that he will cooperate and that they will get what they need today. Secondly ~ please pray that through the EEG they will find that Max is not having any seizures. Please pray that when Max's left side lays limp it is simply because he is tired or not feeling his best. Please pray that they will find only normal brain activity.

We again thank you so much for continually bringing Max before our Heavenly Father,

We keep praying,
Karie

Our Little Hunter

2006-12-14T06:28:00.000-08:00

These are some pictures that were taken over Thanksgiving. We think he'll be a hunter just like his daddy, papao, papa, and Uncle Kelly.

Today the EEG procedure went well. She said we may actually know results earlier than what the pediatrician thought. I hope so. The EEG will show if he has the potential for seizures, not if he has actually had any or not. She said there is a lot that can be seen by the patterns that will show up from the test. I so hope everything looks normal.

We had an exciting "first" tonight. He laughed out loud! It is one of the sweetest sounds I've ever heard and we were able to get it on video. It was a good, good ending to a tiring day.

We start our Christmas celebrations tomorrow. We'll be with the Julian family this weekend and then off to my family's the next weekend. We may be a bit out of touch between now and then with the busyness of the holidays, but I'll try and post at some point.

2006-12-10T15:20:00.000-08:00

Psalms 121:1 says, "I lift up my eyes to the hills. Where does my help come from? My help comes from the Lord, Maker of heaven and earth."

As I'm sure you can tell, my heart is touched by babies who are sick and their families. I think I will always feel a bond to the parents, even when I don't know them, because to some degree I feel that I can relate to what they are feeling and what they are going through. Today I found out about another very sick baby that needs prayers. I feel that it is a important that I spread the word when I hear of someone who needs prayers because so many of you prayed on behalf of Max and our family and we saw what the prayers of many righteous people can do. A 6 month old baby girl named Harper Hawley (Steve Hawley's great-niece) is in the hospital in OKC. She is hooked up to a ventilator and is having constant seizures. I don't know any details more than that at this time. The parents names are Zac and Hayley and they are very scared. So now I am asking all of you wonderful prayer warriors to add her to your prayer list and ask the One who is able to do immeasurably more than all we ask or imagine to take care of and heal this precious baby and to be with her parents giving them the peace and comfort that only He can give.

Baby Parker

2006-12-08T14:40:00.000-08:00

I just checked the websites of the other children on the right of my blog to see if there were any updates. My heart is very heavy as I write this. Baby Parker's family just found out that he has a very rare genetic syndrome that is fatal. I absolutely cannot imagine getting this news. Please pray for this family.

2006-12-08T10:27:00.000-08:00

Well, Wednesday night was an exciting night for me. Max slept through the night!!! At least, what I consider sleeping through the night. He slept from 10:30-5:45. I woke up at 5:15 and realized I hadn't heard him at all, so I ran in his room to be sure he was breathing, even though his monitor would go off if he wasn't (I don't fully trust it) and he was, so I very happily went back to sleep. I fed him at 5:45 and was back in bed at 6. He slept from 6:00 until 9:00! It was very exciting and I was sure that this was the beginning of some really good nights of sleep. Max had other plans. Last night he thought it would be fun to hang out with mommy at 12:30, 2:30 and again at 3:30. At 3:30 we had a heart-to-heart talk and I asked him to please sleep a little longer and he, being the very good boy he is, slept until 8:30. I guess if I have to be up in the middle of the night there is no one better to be up with!
We start physical and occupational therapy next week. We had talked about our options and were leaning towards using Easter Seals anyway, but the decision was made very easy for us when they called to let us know that Cabot doesn't have any openings for therapy and won't for awhile. We will meet with them next week and they'll give us a home program to follow until Christmas, then, as soon as the holidays are over, we'll head to Easter Seals every other week for therapy. They'll give us a home program for the in between weeks. I'm looking forward to getting started with this. I look at is as a way to see Max make great progress and I am confident that he will. I am also really glad that we will have an expert pointing the progress out as well as telling us about any delays that he may (or may not) have.

I talked to his pediatrician about how the left side sometimes lays limp. She agreed with Easter Seals, it could be seizures. She also said that it is just as possible that it's not. She will be setting up an EEG to be sure. I don't really think it is seizures, but I'll be glad to rule that out.

One last medical thing. Yesterday his monitor was downloaded to see if there has been any true heart or respiration episodes and the lady told me a little about the report from last month. Max has actually had a few apnea (stopped breathing) episodes, however, they weren't bad enough or long enough to make the machine go off. He has to actually stop breathing for 20 sec. to make the monitor alarm. She said from what she remembered it wasn't a neuro problem, so I think there are a few possibilites as to what these episodes are caused from. 1, he has a really bad cold, so it may be that he has just had a few breathing difficulties with that. or 2, she was very scatter brained yesterday and she may have been thinking of a different child. She said she would call me when she is back in the office, which could be a few days from now, to let me know more about what the report said. Hopefully we'll know more when we see his pediatrician again. I'm not really worried about this.

Now, for a few more things that will probably bore anyone who is not a grandparent or aunt. :)

Max is getting cuter by the day!!! Of course we think every little thing he does is so, so precious and cute. I think he may be getting close to laughing out loud. I don't know when that really happens, but he looks like it could be soon. He is actually enjoying bath time these days. It used to be a time of day that I dreaded, but I think he thinks it might be kind of fun. He likes to kick and watch the water spash. He also kind of plays with his bath toys. They usually wind up in his mouth. Which leads me to his fists. He LOVES to chew on his fists and sometimes manages to get a thumb in his mouth. I don't know how I feel about this - I really don't want him to be a thumb-sucker. It's cute now but probably wouldn't be when he's 4 or 5 and can't break the habit. I'd like to stick with the paci so I can choose when to let go of that. He is reaching out for toys and I think it's more than just his arms waving around and he happens to hit the toys in the process. I think he is deliberately reaching for them and making contact. He seems to have discovered that he has hands and they can do something. One of my favorite things to do is stand over his bed and watch him sleep before I go to bed. The sounds he makes are so sweet. I love to watch him and think about how perfect and innocent he is and how he doesn't know about anything worldly. This is something I LOVE about children and I wish I could make it last forever. He really melts my heart. It's an inexplainable feeling. God has blessed my life so richly with such a wonderful husband and child.

Sorry if I bored you! You can't say I didn't warn you!!! Have a great weekend!

Ho! Ho! Ho!

2006-12-01T20:41:00.000-08:00

Max was not very impressed with Santa! Santa, me, and Nanny Di did what we could to get Max to smile or even just look at the camera, but he had a full belly and had missed his nap earlier, so he really just wanted to sleep. I figure this is better than next years will be, when he will probably cry when I put him in Santa's lap. We decided to forgo the cute hat that goes with his outfit since daddy thinks it looks a bit goofy. Even though I, along with many others, think it's cute, I'd hate for Max to look back in 20 years and ask why I made him wear a goofy hat, which I'm sure he will do anyway at some point along the way!

Easter Seals

2006-11-30T10:38:00.000-08:00

Well, I will start by saying that John and I agreed, we could have heard much worse today. I really feel okay about how things went (thanks for your prayers) and I only teared up a few times, but it was more just about being in the situation than about what they were actually saying. They started out by putting him on his tummy to see how high he would lift his head and the little stinker just rested his head on his hands and chewed on his fist. No amount of coaxing could get him to lift it. They did several tests and then gave me their recommendations. I'll start with speech - it was the best. She said he is scoring on age level for both expressive and receptive language and that she has no concerns for him. She noticed that he responds to sound, his name, and faces. She said he talks better than any baby she's seen and she wished she could record him and play it for parents to show them how a baby should be talking at that age. She doesn't need to see him back for 9 months. The physical and occupational therapists both said he qualifies for therapy and they recommend it. The majority of his problems, they think, comes from lack of head control. He is behind in visual motor aggression skills (tracking, etc.), he scored at a 1 month age eqivalency for stationary skills (head control) and 2 months for locomotion skills (kicking, moving arms, etc). They said they think we're in it for the long haul as far as therapy is concerned but they think he has really good potential to make good progress. Now John and I have to make the decision as to which therapists to use, Easter Seals or the one here in Cabot if they even have openings. It's a hard decision to make since we just want to do the very best thing for Max and we don't know who has better therapists.

I mentioned how his left side sometimes lays limp and they asked if he had had another EEG to rule out seizure activity. I don't know why I never thought of that. If it is a seizure, it doesn't look like your typical seizure. I'll have to call the doctor and see what they think of that.

We appreciate all of your prayers for this evaluation and for us. I'm still trying to get more pictures on the albums, but it's not working for some reason. I'm also trying to figure out how to get videos on here. Hopefully I can figure that out soon.

Always praying,
Kelly

Wonderful, Wonderful Sleep!!! (and other things)

2006-11-28T06:23:00.000-08:00

Getting ready for Santa!!

Cute hat, but it weighed his head down when he was on his tummy. He kept trying to lift it higher, it just wasn't happening.

Max used to sleep until 4:30, I'd feed him then he'd sleep till about 7:00. That wasn't bad, I could function pretty well on that amount of sleep. Well, we got so out of our routine from all the traveling, plus he was sleeping in his pack-in-play, which he is almost as long as, that at night he would wake up at least every 3 hours and often times more than that. Last night he slept from 10:30-4:30 and from about 5:00-8:30!! I can't remember when I last felt so rested! I do, however, long for the day when he sleeps through the night.

I can already see his little personality developing. Sometimes when I'm holding him he'll cut his eyes over to the side and look at me, then smile the biggest smile, then turn and bury his head in the crook of my arm. He'll do it over and over as long as I am laughing at him. It's the cutest thing.

I think I've already mentioned that Easter Seals is coming Thursday. I feel pretty good about how Max is developing and I don't know if he's doing everything that he should be, but I do know that he is making progress. It seems like every day he is getting stronger and moving better. He still occasionally has trouble moving his left side. It will lay limp while the right side is moving, but I wonder if that might show up more at times when he doesn't feel good. I would appreciate it if you would ask God to prepare our hearts to hear whatever the therapists have to tell us, whether good or bad.

I would like to take a minute to tell everyone who has sent me emails that I have read every single one and deeply appreciate every word. If I haven't emailed you back yet, I do plan to. I appreciate all the encouragement and stories about your own children or children you know who have come so far after a rough start.

We read a verse in Wednesday night class a few weeks ago that has really stuck with me. It's from Romans 9:17-21.

"I raised you up for this purpose, that I might display my power in you and that my name might be proclaimed in all the earth...But who are you, O man, to talk back to God? Shall what is formed say to him who formed it, 'Why did you make me like this?' Does not the potter have the right to make out of the same lump of clay some pottery for noble purposes and some for common use?

Doesn't that just say it all?

May God bless you as you go throughout your day.

Kelly

3 Months

2006-11-27T07:55:00.000-08:00

sitting with daddy's help

I did get a few smiles out of him, but every time he would smile he would lose his balance and wobble over to the side so I never captured it on camera.

sitting in his bumbo

Max turned 3 months on the 22nd.

November 26

2006-11-26T19:27:00.000-08:00

Sorry it has been so long since an update. Max and I have only been home 4 days out of the past 2 1/2 weeks. We spent several days with Karie and her family and then went to Tennessee for several days for Thanksgiving with my family. It was a week of "firsts" for Max - his first trip to Lebanon, first time to meet his two great-grandfathers, Granddad and Papa, first time to meet many of my good, good friends, first time to go to the church I grew up in, first time to wear some of his camo outfits and first time to get a picture with a deer his Papao killed - as close to hunting as he will get for quite a while if I have anything to do with it :) . We then left my parents and went straight to John's parents for their Thanksgiving. We spent 2 nights with them and had a great time. Saturday we went with Nanny Di and Aunt Jill and did some Christmas shopping and Max handled it like a trooper. He didn't cry once, that I remember, and was really in a great mood all day. Next year probably won't be quite so easy if he is anything like his cousin, Daniel, who would probably not tolerate being in a stroller or carseat from 8:30-5:30.

There really is no new news right now. Max is getting so strong. He's rolled over a few more times, we even got it on tape twice. The physical, occupational and speech therapist from Easter Seals are coming back this week and I think they are evaluating him again. I'll definitely update after that. We finally got their written report in the mail last week. It really sounded much more positive than what they said to me the day that they came the first time. I'll try and post some pictures tomorrow.

New Pictures ~ November

2006-11-16T15:47:00.000-08:00

New pictures have been uploaded. Some are of Max's first road trip to see his cousins, Annie & Daniel. He was excited that Papao and GranGran got to come too! See the November album. The picture of Max on the floor is right after he rolled over for the 1st time from his belly to his back!!!!!

Good News!

2006-11-14T18:10:00.000-08:00

We got a good report today. Dr. Burson said the ultrasound showed that things were looking good. The blood has dissolved and it appears that there are no holes in the brain where the blood was. He said that an MRI or CT scan would show that much better than an ultrasound, but he doesn't see the need to do that. He also said that the ultrasound today showed that his brain looks better than it did from last ultrasound he had in September. Thank you, God! He said he doesn't need to see him back for 6 months! We were very pleased with how the day went. We are so, so grateful for all of your prayers!! It really is amazing how powerful prayer is.

Kelly

Tomorrow's appointments

2006-11-13T20:14:00.000-08:00

We are taking Max for an ultrasound in the morning and then an appointment with Dr. Burson, the neurosurgeon, tomorrow afternoon. Please pray for these 2 appointments and that we will get positive news from the ultrasound. Specifically, we would like for the blood to have completely dissolved leaving healthy brain tissue. I will try and update tomorrow when we get home.

Getting stronger every day!

2006-11-08T07:20:00.000-08:00

11 weeks old

Sitting in his daddy's lap last night. He's getting good at holding his head up.

Yesterday Max decided to hold his head higher than he's ever held it before when he's been on the floor. Yay Max!!!

God is Good

2006-11-02T17:35:00.000-08:00

Anyone who knows me well knows that I can listen to the same song (if I like it) over and over again and never get tired of it (poor John). I have been listening to "Praise You in this Storm" and have had it on repeat in my cd player in my car for the past 2 months, but on the way to the doctor today I took one of Max's cd's and I think I have a new favorite. I thought I'd share the words.

You Are Good

When the sun starts to rise and I open my eyes You are good, so good.
In the heat of the day, with each stone that I lay You are so good.
With every breath I take in I'll tell You I am grateful again.
When the moon climbs high before each kiss goodnight You are good.
When the road starts to turn around each bend I've learned You are good, so good.
And when somebody's hand holds me up, helps me stand You are so good.
With every breath I take in I'll tell You I'm grateful again
Cause it's more than enough just to know I am loved and You are good.

So, how can I thank you? What can I bring? What can these poor hands lay at the feet of the King? I'll sing You a love song. It's all that I have to tell you I'm grateful for holding my life in Your hands.

When it's dark and it's cold and I can't feel my soul You are good, so good.
When the world is gone gray and the rain's here to stay You are still good.
So with every breath I take in I'll tell You I'm grateful again.
And the storm may swell even then it is well and You are good.

I emphasized the parts that really stand out to me right now. I think sometimes I get so caught up in asking God for things I want for Max and things I think Max needs that I forget to remember to thank Him for all of the many wonderful and mighty things he has already done for him. He really is so good. May I never, never forget to thank Him for holding Max's life in His hands. I'm gonna go hold that sweet baby and thank God for him.

Praying,
Kelly

Update on Prayer Request

2006-11-02T13:38:00.000-08:00

Kelly & John took Max to their pediatrician. They then sent them to see Dr Burson. He feels that after evaluating Max that his shunt is still working as it should. He thinks that Max has just picked up a virus somewhere that is causing his spitting up/vomiting. He felt his fontanel (soft spot) and said that if Max's shunt wasn't working it would be bulging, it wasn't. Thank You God. Dr Burson said that if Max's shunt was malfunctioning that he would be having projectile vomit. Dr Burson spent more time with them today than he has in the past. Kelly said that he even took some time to play with Max. Please pray for Dr Burson, pray that he will be compassionate and that he will not only care for Max's body but that he will care for Kelly & John's hearts and spirits too. Pray that he and his office staff will be helpful in educating Kelly & John and that they will spend time with them. They had to reschedule Max's next appointment with Dr Burson for November 14. They are going to do another ultrasound the same day and couldn't schedule both Max's u/s and drs appt for the 9th.

Please continue to pray for peace and understanding for Kelly & John. It is so hard for them to be so uncertain of Max's future. Please, please pray that God will continue to intervene and that HE will give them peace that passes all understanding. Please also continue to pray without ceasing for Max's precious little brain. Pray that God will completely heal him and that he will suffer no deficits from this experience.

We all thank you for going on this journey with us. For celebrating with prayers of thanks when we are happy and for praying prayers of intercession when we are scared. We love you,

We keep praying,
Karie

Prayer Request

2006-11-02T09:28:00.000-08:00

Max has been spitting up a lot today. I called the doctor because throwing up is a concern that the shunt is either malfunctioning or is clogged. Not knowing what throw up is like for a 2 month old, I called and described what he was doing. I also told them how his left side hasn't been moving like the right. They told me to bring him in get him checked out just to be sure it's not the shunt. We would appreciate it if you would say a quick prayer that the shunt is continuing to work as it should. I'll update when I get home.

Praying,
Kelly

10 Weeks Old

2006-11-01T11:26:00.000-08:00

Max was 10 weeks old yesterday. In one way it seems impossible that he is that old, in another way, the day he was born seems like a million years ago. John and I have just recently started seeing a difference between his left and right sides. Max is very active with his right side while the left will often times lay limp beside him. The good news is that he can and will move the left side and sometimes he will move it just as much as the right side. I think the older that he gets and the more he moves around, the more we will see these differences. We are trying to make a decision now as to which therapists we should use and we think we will probably try to start therapy pretty soon. We are praying that the left and right sides will both be as strong as they should be and that if there are any deficits that the healthy part of his brain will compensate for those. We are also praying that we will make the best decision about which therapists to use.

I was talking to my dad last night about how we were seeing differences in the two sides and he could tell that I was upset about that. He made a good point that we have faith that God can completely heal Max and we are fully expecting that to happen (even though that may not be God's plan). So even though the doctors told us that they expect the left side to be weaker, when we see that happening we get disappointed. It's not that God isn't answering prayers, because he so is and has. We just don't know the plan he has for Max.

I'm reading a book that Kristin (my sister) gave me. The chapter I'm on now is called The Sea of Discouragement. Here's what it says:

Fresh strength is what every discouraged person needs. Where do you get your strenth? God. He is the true source of strength. The phrase to remember in the midst of discouragement is God's words to Joshua, "Be strong and courageous." God continues, "Do not be terrified; do not be discouraged, for the LORD your God will be with you wherever you go" (Joshua 1:9). God is the source of our strength. Eventually we come to a place where we're able to say, "This makes us confident. No matter what happens.". . . This is the message of Isaiah: "You will keep in perfect peace him whose mind is steadfast, because he trusts in you" (Isaiah 26:3). This is the message of Paul: "For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in creation, will be able to separate us from the love of God that is in Christ Jesus our Lord" (Romans 8:38-39).

Max has an ultrasound on his brain Nov. 9 and then an appointment with Dr. Burson (the neurosurgeon) later that afternoon. Please pray that the blood has disappeared leaving only healthy brain tissue and that there are no empty spots (like cavities) remaining where the blood was.

Sorry for such a long blog. Just wanted to write some things that were on my heart. Please continue to pray for sweet Max.

praying,
Kelly

Happy Fall

2006-11-01T07:38:00.000-08:00

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Originally uploaded by kagreenrn2.

New pictures of Max are in the October album

2006-10-24T19:09:00.000-07:00

Today was a very busy day! We left the house pretty early to get my car worked on before the dr. appt., then we went to the dr., had lunch with Aunt Jill and Nanny Di, visited Nanny Di at work, then went to the pumpkin patch to make some fall pictures. By the time we finally made it to the pumpkin patch, it was time for Max to eat, so of course he was having no part of sitting in the middle of a bunch of pumpkins for a picture. By the time I fed him, the pumpkin patch was closing. Oh well - maybe we'll try again another day. We enjoyed getting to spend the day with Aunt Jill and part of the day with Nanny Di.

The appointment with Dr. Westbrook went well. She is very pleased with Max and thought that he looked great. I'm finding out that many of the developmental scales out there do not say the same thing. I told her about the evaluation with Easter Seals and Cole from yesterday. She said that she does not expect him to be doing a lot of the things they were concerned about until he's about 4 months old. She said he really shouldn't be playing right now except for cooing and smiling, he should be tracking some, and he should have better head control around 4 months. She also said that a lot of the exercises that Easter Seals gave us to do aren't really age appropriate right now. He weighed 10 lbs. 8 1/2 oz. (25%) and was 22 1/4 " (25%). Those are both up from about the 10th % when he was a month old. She also thought he was supposed to have an ultrasound when we went to see Dr. Burson (the neurosurgeon) last month. She is calling him to find out what the plan is for Max in the upcoming months. She said that at this time she thinks he can take care of all of Max's needs for his brain and that we don't need to be with a neurologist. He had 3 shots today. You would think with all that I have seen him go through that a shot wouldn't bother me, but it made me so sad to see him hurting. He got over it pretty quickly - probably quicker than I did. Overall it was a very positive doctor visit.

We have had a very busy day and we're both tuckered out, so I think I'll end here.

We keep praying,

Kelly

Physical Therapy Evaluation

2006-10-23T19:34:00.000-07:00

Today we had another physical therapy evaluation. The therapist, Cole, really took his time and he was great to answer all of our questions. He was very honest but he was much more positive than the therapists from Easter Seals were. He did say that there definitely seems to be a problem - it is just hard to say how involved it will be at this point. He said his main concerns were that there is a definite difference between how he moves his left and right sides, he has trouble tracking, and he doesn't play (grasp for toys, etc) like he should be at this point. According to the test he did, his head control is about a month behind where it should be on some tasks. One area of the test was to see if he could hold his head up when laying on the floor on his tummy. He said it was encouraging that he just mastered that yesterday, that is a skill a 2 month old should be able to perform. He also said that the fact that he just started doing that shows that he is making progress. Max doesn't have some of the reflexes that he should have. There were times when he showed some asymmetry when he smiled and sometimes when he smiled it looked completely normal. His left eye also looks a little droopy sometimes, which he said could either mean that he is sleepy or could go along with how the left side of his body acts differently than the right side. Cole did mention that we could be looking at some degree of cerebral palsy but he said it could be very minor. I asked him if the tone on his right side was high like Easter Seals had said. He said that he thinks just the opposite - that the right side is probably normal and the left side may be a little low. He also said that he doesn't like to speculate this early on about high/low tone - he just knows that there is a difference in the 2 sides and that is a concern. He observed that the left side didn't move as well as the right. He did say that it is possible that by age 2 he could be doing things age appropriately and that some of his deficits at this time could very well be caused from the trauma of having a brain bleed then going through the surgery to place the shunt, not to mention laying in a hospital bed for nearly the first month of his life. He said that Max is certainly not the worst case scenario but not the best either. He did not feel that Max was showing signs at this time that indicated that he wouldn't be able to play sports, etc. and he said he expects to see only progress from this point forward. He recommended starting therapy definitely before he is 6 months old. He said some encouraging things and John and I are really trying to focus on those things. We continue to pray that as the blood leaves Max's brain that only healthy brain tissue will remain. We pray that he will have no deficits and that he will make progress that shows that he is developing as he should. Tomorrow is Max's 2 month appointment with the pediatrician. I have a lot of questions for her and I will try to post about the appointment tomorrow. John and I are thankful for your continued prayers. Please pray specifically that Max will not have any damage to his brain from all that he has been through and that he will grow up to be healthy and strong in mind and body and that most of all he will grow up to love God. Please pray that John and I will make the right decisions for Max, that we will continue to look to God for strength, and that we will not worry about the future.

We keep praying,
Kelly

Pictures

2006-10-22T21:31:00.000-07:00

I was finally able to transfer pictures from my camera. I don't know how to put them on the albums to the right, but I emailed some to Karie, so when she gets a chance she'll update those.

2 months old

2006-10-22T20:07:00.000-07:00

Max is 2 months old today! That just does not seem possible! I have some cute pictures but still can't get them to transfer from my camera to my computer. I don't know what the problem is. Today was also Max's first time to go to church on Sunday morning. He did great and didn't cry once. I had to go to the nursery to feed him and ended up talking to someone in there when church let out so we didn't get to see many people, unfortunately. My youth minister from high school was there today and I don't think I have seen him since I was in high school. I was looking forward to talking to him and showing him Max, but we missed him.

Today he lifted his head off the floor while he was laying on his tummy. We were so excited! He probably lifted it to a good 45 degree angle. I was glad John was home to get to see it. I know this may not seem like a major milestone, but for Max it's a big deal because we've been working on this and waiting for it.

Tomorrow we are having another physical therapy evaluation. We wanted a second opinion on what Easter Seals said. My good friend Bridget recommended the guy that's doing it. He worked with her at the Sunshine School in Searcy and he has had a lot of experience working with infants. He doesn't know anything about Max and doesn't know about what Easter Seals said, so he'll be evaluating him without having preconceived notions about what kinds of problems he might have. He may say exactly what Easter Seals said and that's okay. I'm prepared for that. I'll update tomorrow night and try again with pictures.

Still praying,
Kelly

Papa and Max

2006-10-21T08:00:00.000-07:00

100_0106_0026
Originally uploaded by kagreenrn2.

Max sitting up like a big boy!

2006-10-21T07:59:00.001-07:00

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Originally uploaded by kagreenrn2.

Nanny Di & Max

2006-10-21T07:59:00.000-07:00

100_0132_0001
Originally uploaded by kagreenrn2.

Max is wearing an outfit that Nanny Di got him