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

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

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

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

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Originally uploaded by kagreenrn2.

Max sitting up like a big boy!

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Originally uploaded by kagreenrn2.

Nanny Di & Max

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Originally uploaded by kagreenrn2.

Max is wearing an outfit that Nanny Di got him

8 Weeks Old

Max is 8 weeks old today. I can't believe it. He seems to be changing so much - I wish I could memorize every day. I'm afraid I'll forget the cute, little things that he does. He is really smiling big now and will maintain eye contact for quite a while. He is also making a few noises when he's smiling, almost like he's trying to talk back to us.

The physical therapist and occupational therapist from Easter Seals sent us some exercises to do. He is doing pretty good tracking (following an object with his eyes). He can go from the midline out to the side, but will only occasionally track from the side back to midline. One thing we are really working hard on is getting him to raise his head up when he's on his tummy. I usually have to help him quite a bit, but yesterday he lifted it about an inch all by himself. I was so excited. John held him yesterday and was completely reclined in the chair and he lifted his head a lot. I don't know why he won't do it when he's on the floor. I tried to post pictures of this but couldn't get the pictures to transfer from my camera to the computer, so I'll try again tomorrow. I'm not sure if he can't do some of these exercises because they're not developmentally appropriate or just because he can't do them.

We go to the pedicatrician next week. I plan to ask her about when we will begin to see a neurologist. I feel like there has been very little follow up with the bleeding on Max's brain since we left the NICU. I'm also curious to find out if there has been damage done on the left side of his brain like Easter Seals indicated. And I think I was right a few weeks ago about the ultrasound. One of the doctor's in the NICU apparantly did order one because the insurance company called me to ask details about it. Somehow Dr. Burson didn't get the order, I guess. I'll ask about that, too.

Thank you for continuing to pray for Max and our family. Thank you also for the many cards and comments. We have felt such comfort knowing that so many care.

I will try and update again soon.

Praying,
Kelly

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

Baby Parker Updates & New Pictures

To get updates on Baby Parker please click to link to the right. Also an October album has been added to view recent pics!

Max's cousins Annie and Daniel came to visit for a few days. He wasn't exactly the life of the party, as you can see!




Max's first visit to the park. He was pretty content being held and watching Annie and Daniel have a good time.

We had pictures made at The Click Chick shortly after Max came home from the hospital. She did a great job. These are a few of my favorites.

Max has been doing great this past week. He's sleeping much better (usually) which I am VERY happy about. He is holding his head up really well and I can tell he is getting stronger every day. He has started smiling pretty big at us when we talk to him. This morning John was talking to him and he looked like he was about to start laughing. He has us wrapped around his finger! We don't have any appointments for a few weeks, but I will try to update with new pictures and anything new that he is doing. Thank you, again, for remaining prayerful.

We keep praying,

Kelly

Parker Update

This is the newest post that Melissa has on her blog. You can go to her blog and leave comments that she can give to Angie and Donald, Parker's mom and dad. Or you can leave comments here and I will be sure to pass them on. There is also an address where cards can be sent on a blog I posted earlier. I will try to update on Max soon. I have new pictures from the weekend.

We keep praying,
Kelly

Saturday, October 07, 2006

Parker update
I talked to mom just a few minutes ago and she is just now on her way home from Macon visiting with the Hendley's. She said they had a great time and think it helped lift Angie's spirits a little. Angie is still in a lot of pain, physically, but is taking pain medication (thank goodness for some pain medicine)!Mom said they all cried when she first got there and Angie was updating them, but after that they just tried to keep her mind off of things.

There are a few good things and some still up in the air. Here is what Mom told me.Angie is pumping and they are giving that milk to Parker through the feeding tube! She is still trying to get him to suck and is very hopeful he will make progress soon. He is moving a little, like his mouth and eyes.The doctors have said he does not have down syndrome but they are running other tests to find out exactly what syndrome he does have. The right side of his brain did not develop which I found out controls motor skills. That is why he isn't moving arms and legs much. He is still having bowel movements and peeing. He has only lost a few ounces. Angie gets to hold him pretty much as often as she wants to. Mom said this has eased her peace of mind a little, but of course is still concerned. The doctors still cannot tell them what he will be capable of when he is released. They would like him to be able to suck and breath at the same time and also swallow before he is released. He could go home with a feeding tube and they will administer his nourishment that way. I ask that you pray for these doctors that are doing the tests on Parker and that everyday he will improve in some area. Pray for Angie and Donald that they will have some peace of mind and be able to get some sleep. Pray for Angie's physical healing-having a c-section isn't the easiest thing in the world. Pray for Lauren as she is away from her mommy, daddy, and brother often. Pray that God will heal this little boy and he will have the best life possible. Thank you so much for your prayers. I know the Hendley's will appreciate it. I have put the address of where they are staying if you would like to send them a card. It is in another post below.

Parker Update

This post is from Melissa's blog that she is updating on Parker. There is an address where cards can be sent. Cards were such an encouragement to us when we were in the hospital with Max. Thank you for praying for this family.

Friday, October 06, 2006

Prayer Works
Before I begin I would like to say that the info I am receiving is from my mom who has been in contact with a family member. I know that the info is correct, I just don't know specifics. Angie made it to Macon safely yesterday and got to hold Parker for a few hours. He is not on a respirator but still needs the feeding tube. He was not able to suck or swallow as of yesterday. Today the doctors met with the family and I think were able to give them better news. They said he is now stable, but the right side of the brain did not develop completely. (I am not sure what all that controls) They didn't have a lot of news except that it looks like he will be able to go home in two weeks. After that, they really didn't know how he would do. I don't think they could really tell what all he would be able to do in the future, if anything. Sorry this is such a vague post...this is as much as I have been told. As I said before, this is coming through 3 people, so hopefully I will not have anything mixed up.Angie did try to nurse him and she thought he sucked a little. He has also had a bowel movement and urinated. Those are good signs that some of his organs are working.My mom is going tomorrow to see them, so I hope Angie will be able to tell her more details. Thank you so much to those of you who have passed this story on. I know it will mean so much to them. Angie and Donald were able to get into the Ronald McDonald house and here is the address if you would like to send cards.

Ronald McDonald House of Central Georgia
Angie and Donald Hendley
1160 Forsyth
St.Macon, GA 31201

I will post more tomorrow. Please keep praying! It seems like over the past 24 hours the news hasn't gotten worse, so keep praying.

Deuteronomy 31:6"Be strong and of a good courage, fear not, nor be afraid of them: for the Lord thy God, he it is that doth go with thee; he will not fail thee, nor forsake thee."

6 weeks old

"I have told you these things so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world." John 16:33

I really like this verse. It reminds me that no matter what happens here on earth, when we get to heaven there will be no problems. Max won't have bleeding on his brain, we won't have to worry about his future because his eternal life will be perfect. Baby Parker will be able to hear, his brain will be perfect and he will have perfect health, there will be no more cancer, those who can't walk on earth will be able to run in heaven, there will be no more sickness, no more sadness, no more death. Won't it be great to be there?

Max is now 6 weeks old and I really can't believe it! Time is going by too fast!! I weighed myself this morning and then myself with Max and it looked like he weighs about 9 1/2 lbs now. I'm not sure if my scales are accurate or not though. I think John and I are feeling better about what we heard from Easter Seals. Max may have some higher tone on the right side, but I think he will be fine. We have heard so many positive things about him and he has made so much progress, I really think the devil is trying to make me doubt. He definitely got to me last week. There have been many people who have told us about their children overcoming a bad diagnosis about brain damage, high tone, etc. It has really been an encouragement to me. I remain prayerful that God will heal his brain completely and that there will be no damage from all that he has been through. I pray that he will grow to be stong in mind and body and that most of all he will grow to be a follower of Christ. I ask that you continue to pray these things as well and that you will ask God to keep Satan from making us doubt and worry about the future. Thank you for being such faithful prayer warriors for Max and our family!

I don't know anything new about baby Parker, but I will update if I hear anything. Please, please pray for this family. Their hearts are torn right now and I know they are worried beyond description. Please pray that God will bring healing to Parker and that He will give Angie and Donald (the mom and dad) peace and wisdom as they make decisions for Parker.

Please pray for Parker

I was reading another blog today and read about a family that really needs prayers. I know there are so many people who read our blog, so I was hoping that you could add baby Parker and his family to your prayer list. Our family has seen the power of prayer firsthand and has seen God work in mighty ways. We know he can heal little Parker. Please pray for his family. It sounds like his complications were as unexpected as Max's were. I know the fear, worry and uncertainty that his mom and dad are feeling. I have copied and pasted the info from the other blog so that you can read about him. There is a link at the bottom for a blog that will give updates on Parker.


October 3rd Update on Parker
I have seen through another family very recently the power of prayer and I ask that you keep this family in your prayers. My friend and my mom's fellow teacher, Angie, went into the hospital today to have her baby. It was a scheduled C-section, and Parker was born about 12:30 today. We went to see them tonight and when we got there they had just told them that he probably had down syndrome. They are obviously surprised and upset and I ask that you say a special prayer for them. Angie and Donald have a 3 year old daughter, Lauren. They are a sweet family and followers of Christ. They told us he may have to be taken to another hospital also. That is about all I know, but I will update more tomorrow. Please pass this info on to any other prayer warriors. Thanks.

October 4th Update on Parker
Parker was sent to see a specialist about two hours away. The doctors now have said that Parker's problems go way beyond downs. They think he might have had a stroke and had some siezures even in the womb. He is also partly brain dead. This is much more worse than the doctors originally thought. My mom was going up to see Angie after school. Donald is in Macon with Parker. Parker will be in the hospital for at least two more weeks. Please, Please keep praying for this family. I know this has to be a rough time for them. I will update when I find out more. Please pass this on if you will.

2nd October 4th Parker Update
They thought he had down syndrome but now they have found much more. He is partly brain dead and deaf. He can't eat through a tube anymore and is on oxygen. They took him this morning to a hospital about two hours away and his daddy, Donald is with him. Angie is going tomorrow, Lord willing to be with them. She has been sick with worry and has not been able to eat much and keep it down. They have a 2 year old, Lauren. Please keep this family in your prayers. I will update my blog when I find out new info. if you want to check that. Pass this info on.
http://johnmelandkayden.blogspot.com
Thanks in advance for lifting these special people up.