Julian Family

~ I have prayed for this child and the Lord has granted me what I asked of Him ~ I Samuel 1:27 ~ For I know the plans I have for you declares the Lord, Plans to prosper you and not to harm you, Plans to give you hope and a future ~ Jeremiah 29:11 Lilypie2nd Birthday Ticker

Thursday, September 28, 2006

More pictures have been added to Max's September album

Easter Seals

"But now, this is what the Lord says - 'Fear not, for I have redeemed you; I have summoned you by name; you are mine. When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. For I am your God, the Holy One of Israel, your Savior." Isaiah 43:1-3

"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

Today was a very weird day for me. I was on the parent side of the special education team. I am used to sitting in on conferences with therapists and hearing their evaluation reports, so you would think that I could have handled all the information that I was given. I couldn't. I sit here now feeling very overwhelmed and unsure of everything. It makes me feel really bad for all the times I sat in on conferences with parents and overloaded them with information and then said, "call me if you have questions." Of course they had questions. Because they, like me, are devastated at the thought that their child isn't "normal" so you miss all the details of the information you are being given. Why didn't I take the time during all of those conferences to make sure they felt like they knew everything there was to know about their child and to be more sympathetic to what they were going through? I'm sorry that I can't give you much details from today. I know that I didn't hear what I had hoped to hear. I had hoped to hear that Max is great. That he is doing everything developmentally on target. The occupational and physical therapist both said they noticed higher tone on the right side, which they thought was odd since the Grade 4 bleed was on the right side. In case you don't remember, with a Grade 4 bleed, that means blood has gone into the brain tissue. For Max, it went into the area of the brain that affects physical movement. With it being on the right side of his brain, you would expect to see the left side of his body affected by that. Thankfully, the tone on his left side was good. When I asked what it meant to see higher tone on the right side, I was told that it indicates that there is damage on the left side of the brain. From that point on, anything that they said really did not sink in. They reviewed his test scores with me and the normal range was between 7 and 13, so you would hope to see a score around 10. He scored mostly 7's in all areas, so he barely made the normal range. They said that he would probably not benefit from therapy at this point, but gave me things to do at home. He scored within the normal range on the speech evaluation. There don't seem to be problems with that at this time. They will come back in 2 months to work with him again and see if he would benefit from therapy at that time. I'm sorry that I don't have more information. We will get a written report from all 3 therapist in about 2-4 weeks, I will give more information about the evaluations when I have it. We thank you for your continued prayers.

We keep praying,

Wednesday, September 27, 2006

Max is really enjoying being at home! I thought everyone might be interested in what he's been up to lately. He has recently started holding his head up and looking around a little. He also (at times) will stay awake for longer periods of time and is showing some interest in playing. He loves to look at pictures in books - especially Eric Carle books. He will focus on pictures for quite a while. He loves to look at himself in the mirror and tries to reach out and grab the mirror and he enjoys laying on his back with toys dangling over him and he reaches out and grabs them or hits them. He loves to be talked to and he will turn his head towards John or me when he hears our voices. We love that, of course! The outfit he has on in the pictures is the first "real" outfit that I've even attempted to put on him (everything is so big). The shirt is adorable and was a gift from John's Aunt Frances and cousins Jenni and Ashlee. In case you can't read it, it says "...fearfully and wonderfully made..." Psalms 139:14. The jeans swallowed him whole! The tag says 7-12 lbs, but Max was 7 lbs 2 oz at his appt. a week ago, so someone was very mistaken! He looked cute anyway! He is looking bigger everyday and time is going by so fast already. It's hard to believe he's 5 weeks old.

Again, we come to you for prayers. Tomorrow Max is being evaluated by a team of therapists from Easter Seals - physical, occupational and speech therapists. We hope and pray that their evaluations will show that he is right on target with other newborns his age. Please lift this request up to our Father. Thank you for your continued support, cards, comments, and especially prayers. We continue to be overwhelmed by the many people who are praying for our precious Max. I'll update tomorrow.

We keep praying,

"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

Sunday, September 24, 2006

New Pictures

Originally uploaded by kagreenrn2.
Just wanted to let you know that new pictures have been posted in the September album. This one of Kelly's boys is just a preview!

We keep praying,

Saturday, September 23, 2006

1 month old - 9/22/06

Thursday, September 21, 2006

Appointment with Dr. Burson

Today's appointment went fine. Dr. Burson said the shunt is continuing to drain the fluid properly. They took out the stitches today and Max did not like that at all. I'm thinking he may have a lifelong fear of hospitals and anyone wearing scrubs. I can't say that I would blame him! Dr. Burson said that he should be able to do anything that he wants to do and that we should treat him as a normal kid and not to be overly protective. That will be hard but it's so good to know that he will not have any limitations because of the shunt. He said that he has put shunts in kids that play football and in all of his years of dealing with shunts, he's only seen one that has broken and that was a kid that fell off the monkey bars and fell directly on the shunt. He said that he should have a normal lifespan, which is a relief to hear. He said it hasn't always been that way. He gave me signs to look for if there is a problem and said that there is only a 5-10% chance that it will become infected. I'm thankful that that statistic is so low. We go back in 7 weeks for another checkup. As far as the ultrasound goes, I don't know what I was thinking. I was sure someone had told me we'd have an ultrasound today, but apparently I misunderstood.

I'm trying hard to not think about all of the unknowns and to focus on all the good things we have to be thankful for. I look at that precious baby and my heart melts. God has provided so much for Max already and has been very good to our family.

We keep praying,

Matthew 6:25-27, 34
"Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more important than food, and the body more important than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? 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."

Wednesday, September 20, 2006


We had Max's appointment with his pediatrician, Dr. Westbrook, yesterday and his appointment with my o.b., Dr. Marks, for his circumcision today. Both went well. He now weighs 7 lbs. 2 oz. and is still 19 1/2 in. long. Dr. Westbrook thought his muscle tone seemed fine and thought that his movements were like those of a typical newborn. She said she didn't notice one side being any weaker than the other, so that is a really good thing. She also said he was doing a good job of focusing with his eyes and is actually doing it a bit better than most newborns his age. She said usually newborn's eyes still wander a little when they are as young as him, but he really focuses on people and objects. I asked if we should be concerned about his blood sugar and if that is something that we would continue to watch. She said that usually once that stabalizes it is no longer an issue. He did good today - as good as can be expected I think. He has slept a lot since the appointment and really only fusses when we change his diaper. Dr. Marks and his nurse, Melissa, commented on how strong he is. Dr. Marks said that he was paying special attention to his muscle tone since that had been a concern and he thought it seemed normal. Tomorrow we meet with Dr. Burson, the neurosurgeon. He will have another ultrasound on his brain, so please pray that that will show that the shunt is working as it should and that the blood is continuing to dissipate leaving healthy brain tissue.

John and I have been overwhelmed by all the many, many people who have taken our precious Max before God in prayer. We know that Max has made the progress that he has made and is home now because God has answered our prayers. We praise Him and give Him all the glory!!! We also appreciate all the other acts of kindness that people have shown - goody baskets, books, cd's, money donated to Max's fund, the hotel and cafeteria money, cards, comments on the blog...I know I'm forgetting something. We thank our parents for their support. They have been a tremendous help during this time. A huge thanks to Karie for creating the blog and updating it on such a regular basis. She has done a great job making known our prayer needs. Her wording has been perfect - I truely believe God has given her the words, the strength she needs and the energy to keep up this blog. This has been a very tiring time for our families and Karie has managed to find the time between being at the hospital, caring for her own family and working to keep everyone updated. John and I have not had the energy or time to keep up the blog or to communicate with friends and family verbally. We are so grateful to her, for without this blog we would not have had so many prayer warriors going to God on Max's and our behalf. We are so thankful to God for all of the progress Max has made. We beg you to continue to lift Max up to God. We have come a long way in 4 weeks, but we continue to need prayers for complete healing of Max's brain. When you lift up Max in prayer, please remember the other babies that Karie has mentioned in the past. Their families are hurting and I know it would be comforting to them to know that thousands of prayers are going up on behalf of their baby. I have one more to add to the list. While we were in the NICU I met a mom named Liz. She has a precious son named Anson. He was born premature. They have been in the hospital for 8 weeks and will be there for at least another 2 months. I can only imagine how tired Anson's mom and dad must be. 3 1/2 weeks is short compared to what they are looking at. Anson has a temporary shunt that they tap daily to relieve the pressure on his brain. He has to weigh 4 lbs. before he can get a permanent shunt and go home. He also has some other issues going on due to difficulties with his breathing tube. He may have to go to Children's Hospital and have his trachea reconstructed. As you pray for Max, please remember to pray for Anson.

Thank you to Travel World travel agency in Lebanon for being able to arrange mom's flight so quickly and thank you to the man who donated his frequent flyer miles so that she could fly out here to visit and help me. She slept on a pallet in the living room beside Max last night so that John and I could get some much needed sleep. I felt so much more rested today and John said he was able to sleep through the night. It is great having her here!

We are so happy to have Max at home and to be able to spend time with him - even at 3:30 in the morning! Every single minute that we get to spend with him is just precious. I never expected to feel as much love for him as I do. We definitely feel blessed.

We keep praying,

"My help comes from the Lord, who made heaven and earth. He...will neither slumber nor sleep. The Lord is your keeper; the Lord is your shade at your right hand."

Tuesday, September 19, 2006

Precious angel

Max at 3:30am

100_1403.jpg ~2.
Originally uploaded by kagreenrn2.
Max at 3:30am

Sunday, September 17, 2006

Max is making himself at home, staying up all night, etc!!!

More pictures of Max leaving the hospital and of his first days at home have been added to the September album. I thought this one showing his serious side was cute!!! He also looks like he is loving his swing! We Keep Praying, Karie

Friday, September 15, 2006

Welcome Home Little One, We've Been Waiting for You

MAX IS HOME!!!!! Sorry it has taken me a while to get on and update. We have had quite an eventful afternoon! Dad, Annie, Daniel, (my kids) and I left for Arkansas around 8am this morning. We wanted to be there early incase they released them this morning. Well, Dr Burson was caught up in brain surgery so finally he said that Max could be discharged without seeing him. They are to follow up with him this coming week. I guess he was pleased with the ultrasound report. They are going to have quite a busy week with possibly 3 different doctors visits for Max, his pediatrician, Dr Burson (his neurosurgeon), and Dr Marks (Kelly's OB doctor that will do Max's circumcision). Bless his little heart. So anyway, Max, Kelly, & John got home around 3:30. We visited, played papparazzi (sp??), and gave hugs and kisses before heading back to TN tonight. We are so happy for Kelly & John and look forward to seeing Max grow and flurish. It is now time for them to bond and enjoy life at home with a newborn. It was hard to leave them but this is their family and how precious it is for them to have this time together.

Thank you for all you have done over the past 3 1/2 weeks, especially your prayers.

We keep praying,


One of the neonatologists, Dr "Z", has been in to see Kelly & Max this morning. He said that the ultrasound showed that the shunt is working as it should. The ventricles are returning to normal size which shows that the spinal fluid is being drained appropriately. He also said that the ultrasound showed that there is still a little clot there (I assume on the right side but I'm not sure) but that it is smaller. Please continue to pray that the blood clot will dissipate and will no longer be present in Max's brain. Dr "Z" said that Max looks great and he anticipates that his main issue will be a little weakness on his left side. Please pray that, with therapy, exercise, and most of all prayer, Max will overcome that obstacle. We have seen God answer so many prayers up to this point, I am confident that He can and will answer that one as well.

We are still waiting to hear from Dr Burson, the neurosurgeon. If he didn't come see Max by 12:00-12:30 the nurses were going to call him. Dr "Z" filled out his part of Max's discharge summary. We are just waiting to hear Dr Burson's interpretation of Max's ultrasound report and get his discharge approval.

As you can imagine Kelly & John are so very excited to have Max home. If you have ever had a baby, you remember what it is like to bring them home for the first time. It is very wonderful and exciting but a bit overwhelming too. They are so ready to get into a normal routine for their family. As you also know, if you have had a newborn or have known someone who has, sleep, at times, is in short supply and is precious when you can get it. For these reasons it would be best to not call Kelly & John for a while. Please continue to communicate with them via the blog or e-mail. The doctors have also discouraged visitors as infection is still a major risk for Max. Kelly & John have been through quite an ordeal with their precious son and have no desire to return to the hospital any time soon. Thank you for understanding that they are going to be extra protective of him and are going to appreciate admirers from a distance until he can develop more defenses.

You have all been such an encouragement to our entire family over the past 3 weeks. We will forever be thankful to you and we look forward to sharing Max's life with you. Our updates will probably not be as frequent once they get home as we won't have as much to update on. Please do not forget to continually bring Max and his future before our Heavenly Father. We look forward to sharing milestones and pictures with you as well as updates after doctor and therapist visits. We are thankful to you but most of all we are thankful to God who has heard every prayer that you have said to Him and has answered most of them. We look forward to the answers that are yet to come.

I will give more information when I hear it.

Again, thank you, we love you, and we love Max,
We keep praying,

Thursday, September 14, 2006

MAX IS COMING HOME!!!!!!!!!!!!!!!!!!!!

Just a quick note to tell you that Max is getting to come home tomorrow!!!!!! Thank You God!!!!
Kelly & John are rooming in with him in the hospital tonight. They gave them a room on the pediatric wing of the hospital and he is staying with them as if he was at home. They went to a class today to learn about the apnea monitor that he is going home with. He is nursing well and has not lost weight after having his IV removed.

I will update more tomorrow. Please pray for Kelly & John as I'm sure they are very anxious and excited about tomorrow. Thank you so much for respecting their need for bonding time at home with their son. Please continue to communicate with them via the blog.

We will get results from his ultrasound tomorrow. His discharge is pending those results. Please pray that the shunt is working as it should and that the blood has dissipated. Please continue to pray that Max has completely healthy brain tissue and will not suffer any deficits from this experience.

We love you and thank you so much for praying for Max. Please do not stop!!!!

We keep praying,

Wednesday, September 13, 2006

Max's feeding tube is out!!!!

I talked to my mom tonight and she said that they took Max's NG tube out this morning!!!! He has done well throughout the day taking bottles and nursing. Please continue to pray that his blood sugar will remain stable & above 50. Also please continue to pray for increased strength for Max to be able to tolerate his feedings. He also needs to put some meat on his bones! Please pray for weight gain. He is up to 6lbs 14oz last I heard.

Mom said that they seemed to sleep well for it to be their first night away from Max. Please pray that Kelly & John will continue to have peace and rest.

Please pray that Max will be able to come home soon!!!

We keep praying,

Tuesday, September 12, 2006

Max's first day post op

Max has had a good day. He has nursed well and has rested well. Kelly said that when he nursed this morning he was the most aggressive he has ever been. Hopefully having that pressure relieved will help in this area. He has become a little agitated at times, as most newborns do. He has found that at that time, he is most comforted by laying on Kelly's chest! What a precious bond between mommy and son!

His shunt seems to be working well. Kelly said that she can tell a difference when she feels his fontanels. Both doctors, the neonatologist and the neurosurgeon, were in this morning before Kelly & John got there. (They both slept in, Thank you God, they needed it) So we don't have any updates or feelings from them today.

Kelly & John checked out of the hotel today. Tonight will be their first night to stay at home. Please pray that they will have peace and rest and that Max will have a good night. Thank you so much to everyone that has assisted with the cost of the hotel. We want to specifically thank Kelly & John's Sunday school class as Sylvan Hills church of Christ. You all have been such a support for Kelly & John through your comments on the blog, care packages that you put together, covering the cost of the hotel & meal tickets for the hospital, and most importantly through your prayers. Thank You.

They are going to be doing an ultrasound on Thursday. I assume this is to mainly look at the shunt to make sure it is working as it should. They will also be evaluating Max's brain and the blood that was there. Please pray that the blood is dissipating and that the shunt is working well. Please also pray diligently that they will see healthy brain tissue.

Prayers of Thanksgiving
~Max's life and the strength that he is gaining every day
~They turned Max's IV off last night around midnight and his blood sugar has been holding steady (it was 71 around 1pm today)
~Max's surgery went well yesterday, he didn't have any complications with the anesthesia and he was able to be weaned off of the ventilator immediately
~Max is tolerating his feeding and is nursing better than he ever has
~Max is gaining weight (6lbs 14oz last night, he may loose a little now that the IV has been turned off)
~Max's muscles seem stronger and the occupational therapist, nurses, and doctors are encouraged when they evaluate him
~Kelly & John are getting rest and feeling peace

Prayer Request
~That Max will continue nursing well & that his NG tube will be able to be removed soon
~That Max will continue to gain weight
~That Max's blood sugar will remain steady, above 50
~That Max will not suffer any complications from surgery (infection, etc)
~That the ultrasound on Thursday will show that the shunt is working as it should and that the blood is dissipating, leaving healthy brain tissue
~That Max will continue to get stronger and that he will suffer minimal to no deficits from this experience
~That Max will remain seizure free and that he will be able to be weaned off of his phenobarbitol with no complications or seizures
~That Kelly & John will continue to feel peace. That they will be excited and not scared to look toward Max's future. That Satan will stay far away from them and will not put the "what if's" in their brains. That they will be reminded every day that Max is a gift from God and that no one loves him more than God and HE is taking care of him.
~That through Max's life someone will come to know Christ and the power of prayer

We keep praying,

Thank you for your prayers

Thank you for your prayers and concern for baby Braden Branning. Last I heard the doctors had identified the strain of bacteria causing his meningitis and felt that they were treating him with the right antibiotics and that he would make a full recovery.

I have another request for another precious baby. Her name is AnnaKaye. She was born shortly after Max and has been diagnosed with spina bifida. It is my understanding that she is unable to move her legs unless she is mad, then she can move one of them. Please pray for her parents as I'm sure they are scared and so concerned for her. Please pray for the doctors and nurses that care for AnnaKaye and her parents. Please pray that she will far exceeded their expectations and that God will heal her. Please pray that her parents will have peace that passes understanding. Please pray that God will surround them with family, friends, and fellow christians that will support & encourage them and lift them up continually in prayer.

We keep praying,

Difficulty posting a comment???

I have heard of a few people that have had difficulty posting a comment for Kelly & John. Click on comments below the entry you want to comment on. You will see other comments that people have posted to the left and then an empty box to the right. Type your comment in the empty box. Then below the box you will see blogger/other/anonymous. If you do not have a blog site of your own then click on other or anonymous. If you click on other it will have you enter your name. Then click publish comment. If you continue to have problems just e-mail your comment to me at kagreenrn2@earthlink.net and I will make sure it gets to Kelly & John.

We keep praying,

Monday, September 11, 2006

Exceeded their goals

Dr Benton said that Max has already exceeded their post op goals for him. He is doing well off of the ventilator and they have already given him a little food through his NG tube. They gave him 10cc of formula around 12:00. Their plan was to give him 20cc at his next feeding (around 3pm), then 30cc, etc. The nurse mentioned the possibility of Kelly nursing at 2:30 but they decided to just give it through his tube to conserve his energy. He is still pretty drowsy from his anesthesia. It took Kelly a little while to get him content when they got to his room. Once he got comfortable on her chest he was a happy camper and Kelly hated to move him. The shunt is more visible than Kelly & John anticipated but the doctor said that as he grows and when his hair grows it won't be as noticable.

We are so very thankful for all of the prayers that you have said on Max's behalf today. Please continue as he recovers from his surgery.

We keep praying,

I added a few pics to the September album of Max post-op

Thank you

I just wanted to thank the person that mowed Kelly & John's grass yesterday. This is the second time that it has been done and we want you to know that we have noticed and we appreciate it. They have a large yard and it takes a while to mow and weed-eat/edge. You did a great job and we thank you for seeing this need and taking care of it.

Surgery is done

Max is done with surgery and is off of the ventilator, PRAISE GOD!!!!!! Dr Burson said that he did well and that the shunt was draining as it should. He said that the shunt has a valve on it so that it won't drain too much too quickly. He said that Max is crying and that Kelly & John will be able to see him in 5-10 minutes. He said that they shaved a little bit of Max's hair and saved it so that Kelly can put it in his baby book for his first haircut! He has a small incision behind his ear and one in his abdomen. Please continue to pray for his recovery.

Thank you so very much for your prayers and your concern,

We keep praying,

They just got started

We just got moved to a smaller family waiting room. We just got word that they just started the procedure at 10:30am. Keep those prayers going.

Prayer of thanksgiving - Max's blood sugar was 77 this morning after nursing 3-4 full feedings yesterday

We keep praying,

Monday morning

They ended up taking Max about 10am. They said that he should be gone about 1 1/2 hrs. Kelly & John were able to spend a few hours with Max this morning. Both sets of grandparents and I are in the waiting room now with them. They seem to be doing well. Please continue to pray for their peace of mind as they are so focused on Max and his well being. Please continue to pray for the doctors and nurses as they care for Max. Please pray that the shunt will be effective and that he will not suffer any complications. Please pray that Satan will not discourage Kelly & John with any setbacks. Please pray that Max will not have any problems with the anesthesia and that he will be able to be weaned off of the ventilator without any difficulty. Please pray that Max will not have any seizures from the stress of the surgery and please pray that his blood sugar will remain stable. Please pray for Kelly & John when they see Max for the first time after surgery. Please pray that God will give them comfort and keep fear from their hearts and minds.

More updates when we have more information.

We keep praying,

Sunday, September 10, 2006

Monday is the big day

Max is scheduled for surgery in the morning (Monday). Kelly & John are planning to be at the hospital around 7am to spend some alone time with Max before they take him to surgery. We are not sure exactly what time they are planning to take him to get his preop stuff done. They are planning to start the procedure around 9:30 or 10:00am. The doctor told Kelly & John that they will probably just bring Max back to NICU to recover from surgery. So hopefully once they have him stabilized there Kelly & John will be able to come back. They have told them that he will probably still be on the ventilator and IV. I will try to update tomorrow from my dad's laptop when we know something.

Prayer Requests
~Please pray for Max, that he will be strong, that he will have peace & not feel pain
~Please pray for Dr Burson, the nurses, and techs that will be taking care of Max in surgery. Please pray that they will have wisdom and clarity of mind. Please pray that they will be focused on the task at hand and that they will not have any difficulty placing the shunt
~Please pray for the anesthesiologist that will be putting Max to sleep. Please pray that Max will not have any difficulty with the anesthesia medicine. Please pray for the doctor, that he will be very aware and focused on Max and what he needs.
~Please pray for Max as he recovers from surgery. Please pray that he will not have any complications, that he will be able to be weaned from the ventilator without any problem.
~Please pray that Max's blood sugar will remain stable during the stress of the surgery and recovery period
~Please pray for Kelly & John. Please pray that they will have peace and understanding. Please pray that they will feel God's arms around them and around Max as they kiss him and hand him over to the surgery staff in the morning. Please pray that they will be able to rest and that the rest that they get will be sufficient for them. Please pray that they will gain strength from God and from each other
~Please pray for us as their family, that we will be the support that they need, that we will know when to talk and when to be quiet, that we will know when to be present and when to leave them alone as a family
~Please pray for communication and compassion from Dr Burson and the nurses tomorrow
~Please pray that the shunt will be effective and that Max will grow up and be able to lead a completely normal, healthy life

We will never be able to thank you enough for your prayers. Please pray without ceasing on Monday.

We love Max and we keep praying,

Prayer request for another baby

I know we have a lot of prayer warriors reading this site. I want to ask you to pray for another baby. His name is Braden Branning. He is the son of a couple in my class at church. He was taken to LeBonheur Children's Hospital in Memphis last night with spinal meningitis. Please pray that he will make it through this and will not suffer any permanent effects. Please also pray for his parents, Brad & Jamie, and for his big sister, Mason, that they will have peace & rest.

We keep praying,

Saturday, September 09, 2006

New pictures

I have added a September album to the right under "family photos". These two are just a preview! Max has had a good day. Not much to report. They are back to attempting to nurse every feeding. They are still topping him off with formula/breast milk through his NG tube if they feel it is necessary. His blood sugar was 51 tonight. Please pray that it will stay above 50. He is getting so much stronger. It is evident when you hold him. Kelly & John slept in a little bit today which was great for both of them. My dad, my kids, and I are back in Little Rock as of tonight. We are so blessed to be able to be here with Kelly & John. Please continue your prayers of thanksgiving and specific prayer requests that I listed yesterday.

We keep praying,

Friday, September 08, 2006

No news is good news

Max had a good day today. I really don't have a lot of new information to post. I talked to Kelly for a little while this morning. She sounded great. She left Max with GranGran and actually went back to her room to rest and make some phone calls. They met with the occupational therapist yesterday. She was very encouraging. She pointed out several things to Kelly & John that encouraged her. Kelly & John asked her about Max's muscle tone and she said that she would maybe say he had "slightly low tone" but she was not overly concerned at all. She held Max's arm up and when she dropped it he had some control of it which she said was good. She was also encouraged at how he moved his arms and legs. She said he pulled them to the midline on his own and without difficulty. None of this really means much to me but if it encouraged the therapist, then I am encouraged! They asked her about what the physical therapist had said about his slightly low tone being a neurological issue and not being able to be helped by therapy. While she said that she respected the physical therapist, she feels that it will be months and years before we can make that call. This also was good for Kelly & John to hear. She encouraged them to incorporate his exercises and stretches into his play so that it can remain fun for all of them instead of just being something to mark off their "to do list."

Kelly said that they told them that they need to be at the hospital by 7:30 on Monday morning to see him before they wheel him back to surgery. They should start the procedure around 9:30-10:00. We are unsure at this point if Kelly & John will be able to go to recovery when he gets done or not.

Prayers of Thanksgiving
~Max's life and all that he has already taught us
~Max's conjugated bilirubin level is within normal range (<1)
~Max's blood sugar remains stable off of IV fluid
~Max is getting to wear clothes! Bless his little naked self!
~Kelly & John are feeling peace
~Max's issues have not been due to a genetic or metabolic disorder
~There is a very experienced pediatric neurosurgeon available to place Max's shunt if it is needed
~Max has been seizure free for over 2 weeks

Prayer Request
~Max's increased strength
~That the aquaducts in Max's brain will be cleared and the fluid will drain and will be evident to the doctors so that a shunt is not needed
If that is not God's will....
~That if Max needs a shunt it will be placed without difficulty and that he will recover quickly and without complication
~That Max's shunt will not become infected
~That Max will be able to be weaned from the ventilator quickly and without any difficulty
~That Max's blood sugar will remain stable through the stress of surgery
~That Max will be able to tolerate his feedings after surgery
~Wisdom, clarity of mind, & compassion for all of the doctors, nurses, techs, and other hospital employees that take care of Max, Kelly, & John
~That Max will be able to be weaned off of his phenobarb without complication and seizure

We keep praying,

Thursday, September 07, 2006

Be strong & courageous and Do not be afraid

Duet. 31:6 says Be strong and courageous! Do not be afraid of them! The Lord your God will go ahead of you. He will neither fail you nor forsake you.

Thank you Joan for e-mailing this verse to Kelly & John today. I'm sure it is exactly what they need to hear right now. I only talked with John for a short time today so I don't have a lot of details. I do know that they have scheduled Max to have a shunt placed around 9am Monday. I think that Kelly & John had a tiring day. You know anytime anyone goes for surgery they have to tell you all of the risks and what their bodies will go through, etc. I'm sure that for Kelly & John the thought of Max having to be put to sleep and going through surgery is terrifying. Please continue to pray for peace and understanding. Please pray that they will "be strong and courageous and not be afraid." And it is not too late to pray for God to clear the aquaducts in Max's brain so that the fluid can drain as it should eliminating the need for a shunt.

Kelly & John got to go to an infant massage class tonight. I'm sure they are ready to be able to implement what they learned!

Mom said that Max nursed well today. They are still nursing every other feeding. The other feedings are through his NG tube so he can save his energy. Please pray that after surgery he will pick right back up where he left off with eating.

Please pray for peace and rest for Kelly & John as well as the rest of the family as we are so very focused on Max. Please pray that we will be the support that Kelly & John need in this time.

We keep praying,

I added some pictures to the family album to the right.

Wednesday, September 06, 2006

Didn't see the neurosurgeon today

Kelly & John waited patiently all day to see Dr Burson and he never arrived. Being in the medical profession, I try to give the Dr, therapist, etc the benefit of the doubt. I mean, I work in a hospital, I know he has a lot of patients and things come up. But when you are on the family side of things, you have a totally different view. Of course to us none of his patients are more important than Max. So we still don't know about the shunt. Hopefully Kelly & John will be able to get some answers tomorrow either from one of the neonatologists or from Dr Burson. It is so hard to wait and not know something. Since Max wasn't put on the surgery schedule for tomorrow I came home to Memphis tonight. I am working a 12 hour shift tomorrow so I won't be able to post until tomorrow night. Please pray throughout your day for peace and understanding for Kelly & John as they talk with Dr Burson. And please pray for Dr Burson. Please pray that God will put it on his heart and in his mind to spend some time with Max, Kelly, & John tomorrow. Please pray that he will have wisdom and compassion as he makes decisions for Max's plan of care and as he communicates with Kelly & John. Please continue to pray for Max. His head was 1cm larger today. They went back to nursing every other feeding today because he was pretty tuckered out. He still has his NG tube. Thank you so much for all of your comments and prayers over the past couple of days. I want to specifically thank Kim, Ashley, and Kelly W. It has been so encouraging to hear from other professionals that have training in therapy. It has really meant a lot to Kelly & John to hear what you have had to say as they were pretty discouraged and confused after the PT's evaluation of Max's muscle tone. Also thanks to those of you that have shared experiences and success stories from children that have been given a similar diagnosis. Thank You so much for your continued thought and prayer, We Keep Praying, Karie

Quick update

Kelly & John met with Dr Benton this morning. He said that in listening to the ultrasound report he thinks that Max's need for a shunt is probable. He said that the ultrasound showed that the ventricles in Max's brain are still enlarged I guess indicating that there is still a back up of his spinal fluid. He said that this is just his impression and that it will be Dr Burson's decision. Please pray for Kelly & John as they meet with Dr Burson today. Please pray they will have peace and understanding and that Dr Burson will have wisdom as he makes decisions for Max's plan of care. Please continue to pray that if the shunt is needed that it will be placed without difficulty and that Max will recover quickly and without complication. If Max needs a shunt, thank you God that it is available to him.

We keep praying,

The Power of Prayer

No ocean can hold it back
No river can overtake it.
No whirlwind can go faster.
No army can defeat it.
No law can stop it.
No distance can slow it
No disease can cripple it.
No force on earth is more powerful or effective than the Power of Prayer.

This was on a card that Kelly & John received yesterday. I thought is was very well worded and so true. We can never thank you enough for the prayers that you have said and continue to say for Max, Kelly, & John.

I added a counter to the bottom of the website yesterday. Scroll all the way down if you want to see how many times this site has been viewed since yesterday and how many people are continually lifting Max up to God with you. I wish I had done this at the beginning. It is so encouraging.

We keep praying,

Tuesday, September 05, 2006

With a grain of salt

First of all, thank you all so very much for your comments after this morning's entry. You all are so right, Max has overcome so very much in his first 2 weeks of life and he is not going to stop now. Isn't it amazing how hard Satan works when he knows that God is winning the battle. He is trying to discourage all of us and we are not going to let him. We have sooooo much to be thankful for and soooooo much to look forward to in Max's future! After talking to a few people today, I feel that we need to take what the therapist told Kelly & John with a grain of salt. A good friend of mine is a physical therapist and she was shocked that the therapist even mentioned anything neurological. She said that while it could be a neurological issue it can be caused by several other things as well. It will probably be months at the earliest before we know. She also said that some babies & people in general are just born with lower muscle tone than others and it is not necessarily anything to worry about. Thank you Kim for talking through it with me and thank you for your encouragement. I told Kelly & John the things that you said and they were very encouraged and appreciative.

Max had a great day. He nursed several times and seems to be getting the hang of it! They are still topping him off through his tube at the end of his feedings because he tires out but today he did much better and seems to be getting stronger. Little boys are a little lazy sometimes so we had to work to keep him awake! I am excited to say that Mom and I got to hold Max today for the first time in almost 2 weeks. It was brief, just to burp him, but it was precious! He is so tiny!!! I took some pictures and video today but I may have to wait until I get home to get it on the site.

They did Max's ultrasound around 3pm today. Hopefully we will hear results in the morning. Please continue to pray that the blood is continuing to dissipate and be absorbed and that the spinal fluid is draining as it should so that he won't need a shunt. Please also continue to pray for Dr Burson, that he will have wisdom and clarity of mind as he interprets the ultrasound and decides Max's plan of care.

John is possibly going to go back to work some this week. Please pray for him, that he will have peace leaving Kelly & Max at the hospital. Please pray that he will be able to focus and get his work done as quickly as possible so that he can return to them. I speak for the family when I say that we are so thankful to you, his coworkers, for being so supportive and compassionate as he has taken time off to be with his family. We also thank you for being understanding when he comes back to work as he is going to be very focused on getting his work done so he can get back to his precious wife and son.

Please continue to pray for rest for Kelly & John. Kelly said that she wakes up several times throughout the night. Please pray that the rest that they get will be sufficient. Please continue to pray for peace as they continue to hear different things from different medical professionals. Please pray for wisdom for the doctors, nurses, and therapists as they communicate with Kelly & John. Pray that they will be honest but that they will choose their words wisely and be encouraging and optimistic.

More tomorrow when I know results from the ultrasound.

We keep praying,

Thank You from Terry & Diana (Max's Papa and Nanny Di)

"Thanks to all of you at the Arkansas Department of Education, PV Church of Christ, Benton Central Office, neighbors in Shenandoah and everyone else for the caring thoughts, prayers, flowers and gifts you have given on behalf of Max. All of your gestures, even though they may seem small to you, are really huge to us. We are blessed to have such special people in our lives. Most importantly, Max is blessed. He is improving daily and we are so thankful. Papa and Nanny Di are so proud of him and John and Kelly.""Prayerfully, Terry and Diana Julian"

Thank You to the Chism Family from Max's Papa & Nanny Di

"Family Chism,You know who you are. Thank you so much for your diligent, earnest prayers for Max. We have a large family and we know how dedicated you have been to Max, John, Kelly and Terry, Jill and I, as well as the rest of the Julian-Stewart family. We are blessed with this large, but close, family who always answer when the need arises. This has been a difficult time, especially for Terry, who just lost his Mother. Thank you for your non-waivering support and for enlisting churches across several states in prayer. We love you and appreciate you so much. Watching and praying, Papa and Nanny Di (Max called me this in my dream last night so this is what I will be called.)"

I also want to thank you. It has been so encouraging to our family to read all of the comments from John's aunts, uncles, and cousins. You are such a support system. John, Kelly, & Max are blessed to have you, as well as the rest of our extended families, traveling down this road with them. Speaking for the Stewart side of the equation, we are blessed to be a part of your family! We keep praying and know you do too, Karie

Therapist & Dr Burson evaluation

The physical therapist came and evaluated Max this morning. She said that he has slightly low muscle tone. She told Kelly& John that this indicates that something neurological has been damaged. She also told them that usually it is not improved with therapy. We are not sure what this means for Max's future and how it will affect him. Please pray that through his exercises and stretches he will be able to compensate and his muscle tone will improve. She did not feel that aggressive therapy is needed at this point. Kelly & John are to continue doing his exercises and stretches and she will continue to come evaluate Max.

Dr Burson came to see Max this morning. He said that in feeling his fontanels not much has changed. However, before making any decisions about a shunt, he has ordered an ultrasound. Kelly doesn't anticipate hearing any results from that until tomorrow. She is not sure what time the u/s will get done today. Please pray that the ultrasound will find that the fluid is draining as it should and that a shunt will not be needed. Please continue to pray for Dr Burson, that he will have wisdom and clarity of mind as he interprets the ultrasound results and decides Max's plan of care.

Max's blood sugar was 58 during the night. As of now they are going to keep him at 24cal/feeding. They will decrease it if his sugar remains above 60.

Kelly sounded pretty tired today. Please continue to pray that she and John will be able to sleep soundly and that the rest that they get will be sufficient for them to get through today.

We keep praying,

Monday, September 04, 2006

Thank you Maple Hill church of Christ & Friendship faculty

Thank you so much for the prayer book that you sent Kelly & John. It has been so neat to look through and read. There are prayers in there from some people that have known Kelly since she was Max's age and some that she has never met. Each prayer and Bible verse have been so encouraging and very much appreciated. It is so special to have the notes in a book like that and be able to read them over and over.

We keep praying,

Can God talk though a fortune cookie??

So if God talked through a burning bush in the Bible, do you think he could talk through a fortune cookie today?!?! I'm not so sure about that but I thought this was neat. Annie's (my little girl) fortune cookie last night said "Your hard time is coming to an end, joy will replace!" Now, believe me, I'm not saying that I believe that God talks through fortune cookies!! But, I do think that, if we are aware and open to it, He shows us, in little and big ways, that He is with us and in control of our life. I think we will have to save that for Max's scrapbook!

Sorry I am just now posting. We have been at the hospital today and Dad took his laptop home so I wasn't able to post while Daniel was sleeping! Today was a good day. The neurosurgeon never came. We are thinking that when he told Kelly & John he would be in Sunday or Monday, he forgot it was a holiday weekend. They are hoping to see him tomorrow. Dr Benton did come in this morning. He said that Max looks great. He seemed so encouraged at how Max is acting. He said that he looks like an infant that has no problems at all. Thank you God!!!!! He said that the plan of care for Max is in Dr Burson's (the neurosurgeon) hands. Please continue to pray that Max will not need a shunt.

Max's blood sugar has remained stable. They are now checking it every 12 hours. As long as it stays stable they are going to decrease his calories by 1 cal/feeding every 24 hours until they get to 20 calories/feeding. He still has an NG tube. He nurses for a while and they they top him off through his NG tube when he tires out.

Prayers of Thanksgiving
~Max has been nursing more, when he can stay awake! He likes to be close to his Mommy, it puts him right to sleep!
~Max's blood sugar has remained stable off of the IV fluid
~Max did not loose weight today ~ 6lbs 2oz
~Max's temp has remained stable (98-99)
~Max's head circumferance was the same today (36.5cm)
~Kelly & John are feeling peace while caring for their precious son and looking to his future
~Max "looks like an infant that has no problems at all"

Prayer Requests
~That the blood on Max's brain will continue to dissipate and absorb, leaving healthy brain tissue and allowing the spinal fluid to drain as it should
~That no shunt is needed
~For wisdom and clarity of mind for Dr Burson as he decides Max's plan of care
~That Max will remain seizure free as they adjust his phenobarb
~That Max will be able to be weaned off of the phenobarb without complications or seizures
~That Max's sugar will remain stable
~That Max will gain strength and be able to tolerate his feedings so that his NG tube can be removed
~That Max will have no brain damage and will have no deficits from this experience
~That the physical therapist evaluation will go well

I'll update when I know something tomorrow. If I don't hear anything before going to the hospital it will be tomorrow night. Thank you so very much for following Max's story and for continually lifting him up in prayer throughout your day.

We keep praying,

Sunday, September 03, 2006

Afternoon update

Max is having a good day today. The neurosurgeon hasn't been in to evaluate Max today. Hopefully he will be in tomorrow. Max's blood sugar has been stable. They are going to just be checking it once a day now. His little heels needed a break from the needles! He is still doing good without the IV! Thank you God. He has lost several ounces over the past few days but they are thinking it is mainly from loosing the extra fluid and swelling from the IV. John said he took his bottle really well for him this morning. He said he was really awake and alert and took the 1st 45cc in about 10minutes. They tried nursing again this afternoon around 3pm. He was pretty sleepy but nursed a little. I think tomorrow they are going to try to nurse on his time when he is more awake and alert. Kelly is doing so good and is so dedicated. With everything else she is having to deal with it would be so easy to stop pumping and trying to nurse. She is so dedicated to Max. She is such an awesome Mommy already!

This is a picture of one of Kelly & John's favorite nurses. She has been such an encouragement. At the beginning she was very cautious in talking with all of us about what to expect with Max and what his diagnosis meant. She told us today that she is so encouraged and can see such a change in Max over the past few days. We are so thankful to have such an awesome support for Kelly & John in the nursing staff. They have not only taken care of Max...they have taken care of his Mommy & Daddy too. Thank you!

Please continue to pray for Max's brain. Pray that the blood will continue to dissipate so that the spinal fluid can drain as it should. Please pray that there will not be any increased pressure on Max's brain from the fluid. Please pray they will not have to do a shunt. If a shunt is needed, please pray that it will be placed without difficulty and that Max will heal completely without complication.

We keep praying,

Thank You Friendship Christian School

Oh my stars, how can we ever thank you for the love and kindness you have shown our family. We are completely overwhelmed by your generosity and thoughtfulness. The cards & notes of encouragement, food, lotions, books, magazines, house shoes, money for the vending machines, and money for Max's account....you thought of everything. We especially want to thank you for the prayers that you have said on Max's behalf and for passing around the website so that others can follow his progress and lift him up to God. I also want to thank you, again, for encouraging Mom to be here and for taking up the slack while she is gone. It has been such a blessing for all of us to know that she is here to support Kelly. Max loves his GranGran already! Your support and encouragement will never be forgotten.

We keep praying,

New pictures of our precious Max

Saturday, September 02, 2006

The New Plan

Last Monday we all had a plan. Kelly & John were to be at the hospital at 5:30am on Tuesday morning to be induced. Our plan was that they were going to have a healthy, happy baby boy and surely we would all be home by Thursday or Friday. Well, God had a different plan that none of us were aware of. It has taken us several days, but we are beginning to embrace the new plan, God's plan. Dad, my family, and I came to Arkansas today. It is has been so encouraging to see Kelly & John. They both seem so peaceful. They are, of course, both still extremely focused, stressed, and concerned about their son and his future but they feel peace. Kelly has smiled, laughed, and seemed more like herself today.

As you know, if you have ever seen a newborn, newborns have funny movements, they startle easily, etc. All of us are so aware of Max and his state of being that we are constantly asking, "is that a normal newborn movement or reflex, or is something going on in there that is causing a problem?" Please continue to pray for peace for Kelly & John and the rest of the family as we are still so concerned about Max and what the future holds for him. Please continue to pray that his brain will recover completely and that he will have minimal to no deficits.

Max's head circumferance is another 1/2cm larger today. It is now 36.5cm. The neurosurgeon is supposed to be back in to evaluate Max either tomorrow or Monday. He will then decide his plan of action regarding a shunt. The physical therapist will probably be back on Tuesday to evaluate Max and watch Kelly and John do his exercises and stretches.

Prayers of Thanksgiving
~Max nursed well today for about 45 minutes. They plan to try to nurse twice tomorrow
~Max is doing well with his bottle feedings (mixture of formula and breast milk) They are still feeding him through his NG tube every other feeding so he doesn't tire out
~Max's blood sugar has remained stable for >24 hours without an IV
~Max's temperature was 98.6 tonight
~Max has been resting well and has had several periods where he is awake and alert
~We are all getting our minds and hearts wrapped around the "new plan" and we are excited to see what God has in store for Max
~Max's exercises and stretches are going well and he is loosening up

Prayer Requests
~That the growth of Max's head is normal growth.
~That the blood on Max's brain will continue to be absorbed and that the fluid will drain as it should so that Max will not need a shunt
~If a shunt is needed, please pray that it will be placed without difficulty and that Max will heal completely, without complication
~That Max will suffer no increased intracranial pressure from the excess fluid on his brain
~That Max will have healthy brain tissue and will have suffered no brain damage
~That Max will have minimal to no deficits
~That evaluations from the doctors, nurses, and therapists will continue to be encouraging and that they will show that Max is right where he should be physically, mentally, and neurologically

I know I have said this over and over but we can never Thank You enough for all of the prayers that you have said on Max's behalf. It has been so encouraging to us to know how many people are following Max's story and continually lifting him up to God. We beg you to continue your prayers for Max without ceasing.

We love you all,
We keep praying,

Friday, September 01, 2006

A few updates

I just reviewed all of your comments after my last post. You have no idea the strength and encouragement that we, as Max's family, get from your comments and most of all your continued prayers. We will be forever thankful to you. Thank you for sharing in our joy as we heard wonderful news today from the doctors.

I have just a few updates after Kelly & John met with the neurosurgeon. He is feeling pretty confident that Max is going to need a shunt. As of now he is thinking probably the middle of next week. That gives us several days to PRAY!!! He told Kelly & John that the CT scan did show that the ventricles in Max's brain are swelling a little bit (I assume this is due to the excess fluid). He also said that Max's fontanels (soft spots) feel a little more full than they did when he first assessed them. He said that, unless he is needed before, he will re-evaluate Max Sunday or Monday. The CT scan did show that there are no pits or cavities in Max's brain tissue which is a huge answered prayer.

Max was moved to the step-down unit today. This is a good move in that it means that Max doesn't require as high a level of care as what is offered in the NICU. Max's new room is about 1/3 the size of the NICU room so it is cramped quarters! They are also having to get to know a new batch of nurses and I'm sure the nurse to patient ratio is not what it was in NICU. Please pray for kind, compassionate, and attentive nurses.

Please continue to pray for rest and peace for Kelly & John. The roller coaster ride that they have been on for the past 1.5 weeks is taking its toll on them. Please pray that Satan will not discourage them with his "bumps in the road"as we see God working and healing our little Max. Please pray that they will continue to get their strength from God and from each other. Please pray that God will continue to put people in their lives who have been there and have overcome the hurdles that they are facing. Please pray that the rest that they get will be sufficient for them to get through the day.

We keep praying,

The CT results are in

"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 glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen" Ephesians 3:20-21

The CT results are in. The blood on Max's brain is being absorbed!!!!!! Praise be to God. Hydrocephalus (too much fluid in his head) is still an issue and may still require a shunt. The decision will be up to the neurosurgeon, Dr Burson. Kelly & John hope to meet with him sometime today.

Dr Benton said that Max is right on target neurologically, compared to other full term newborns. The last thing he said when meeting with Kelly & John this morning was that "all of the letters, cards, and PRAYERS must be paying off" It meant sooooooo much to Kelly to hear him recognize the power of prayer. We can never thank you enough for continually bringing Max before God.

Dr Benton said that genetics is not an issue. Thank you God.

Max's IV was turned off yesterday before 6pm. Before it was turned off Max's blood sugar had remained in the 50's. During the night and this morning, off of the IV, it has been remained in the 60's. Thank you God.

I heard Kelly laugh for the 1st time today in over a week. It sounded soooooo good.

Prayers of Thanksgiving
~Blood on Max's brain is absorbing
~Thyroid tests and clotting studies came back normal
~Max's bilirubin level is down again today, Kelly thinks it was 1.3 (normal level is <1)
~Max's phenobarb level continues to go down without any seizure activity.
~Genetics is not an issue according to Dr Benton
~Max's blood sugar has been stable off of the IV
~Max seems to be loosening up some, not as stiff as he was when he first started waking up
~Max can take a whole feeding by bottle
~Head circumferance hasn't grown - holding steady at 36cm
~Neurologically on target compared to other term infants
~Kelly was able to laugh today

Prayer Requests
~Wisdom and Clarity of Mind for Dr Burson, the neurosurgeon, as he reviews Max's CT scan results and as he decides the plan of care
~That the blood on Max's brain will continue to be absorbed leaving healthy brain tissue
~That Max will continue to develop and respond appropriately as would a healthy term newborn
~That the fluid on Max's brain will drain as it should and not put any pressure on his brain so a shunt will not be needed
~That if a shunt is needed, it will be placed without complication and that he will recover fully
~That Kelly & John will continue to feel the peace that passes understanding and that the rest that they get will be sufficient for them
~That Max will continue to loosen up and that his exercises and stretches will be beneficial for him
~That the physical therapist evaluation will go well

We keep praying,