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Tuesday, July 22, 2008 10:08 PM CDT

Hi Everyone,

We are having a great summer! Jordan has been loving her camps. She was told she had the model swing at golf camp, she learned how to braid at day camp and she is having a wonderful week at vacation bible school. AJ loves being home with me during the summer. He is staying busy with therapy and doctor appointments. I know, not the best way to spend your summer vacation. He does love therapy though. Ms. Lisa is great for him and she makes working out fun. I will take some pictures at therapy and post them. His favorite thing this summer...Going to Monster Jam to see the Monster trucks!!!! If it were not so hot, he would have enjoyed them even more. Hunter is busy eating, crawling, pulling himself up, falling down, etc... He is a very active 10 month old. If only he would sleep at night.

Here is the latest on AJ...

Physical therapy is going well. He continues to get stronger every week. He even took 99 steps by himself.

We saw the cardiologist a couple of weeks ago and AJ's pressures are still low. Yeah!! We have never gone this long with low pressures. This means heart is stable and we go back in 6 months.

We visited Kennedy Kreiger today for the feeding clinic. They recommended outpatient treatment for him. Yeah again! They usually recommend inpatient. Now he can go once a week to work on his eating. Let's hope that insurance will cover it. He won't start for a couple of months, but we are working hard on it at home.

We are waiting to meet with dermatology about the light therapy and his tear duct procedure will be in October.

We are looking forward to a much needed vacation in a couple of weeks to Georgia and the beach. Then school will be back in session and Hunter will be turning one. Where has the year gone?

Love to everyone,
Mel

Wednesday, June 4, 2008

Hello Friends,

Today is the 4th anniversary of AJ's first heart surgery. Wow! Time certainly has flown by.

AJ is doing well. Physical therapy is helping him to walk again. He has taken several steps on his own and everyone is confident that he will be an independent walker. That would be great for the new school year. We are still playing with the amount of vit. d he is getting and are hoping to get his levels up to a normal range. If medication does not work, light therapy here we come.
We saw GI yesterday and although a couple of his numbers are a little lower than normal (liver function and platelets), his liver is still stable. We see cardiology next month and are hoping to get his tear duct opened up this summer. It has been clogged since he was a baby.

AJ has had a great school year. He will be in the same program again next year, but will go in the afternoon. HIs speech continues to improve and his new favorite question is "Why not?" Are main focus this summer will be on eating and learning his letters. Plus a little potty training on the side.

Jordan is finishing up school next week. The second grade is performing in a concert this week and she made it into gifted and talented for math. She is signed up for a few camps this summer, including golf camp.

Hunter continues to get big and cause trouble. He has figured out how to climb out of the walker and if his legs were a bit longer, I'm sure he would be up the stairs too. He is very vocal and is eating like a champ. Maybe he can teach his older brother how to eat.


Check out the new pictures!

Love to all,
Mel

Monday, March 24, 2008 9:34 PM CDT

Hello Friends,

Spring is finally here and we are looking forward to warmer weather. I can't believe we just celebrated Easter and are on Spring Break this week. Before we know it, Summer vacation will be here.

AJ is doing very well. He had a very happy 4th birthday. It was all about Cars. Since our last posting, we have visited with a number of doctors and finally have pinpointed his muscle weakness to low phosphorus, vit. D and calcium. We are currently treating that and his levels have started to come up. He is also getting extra physical therapy each week to increase his strength and energy level. He has been going twice a week for the last month and we have seen some improvement. We visited with his GI team last week and although they are seeing signs that his liver disease is progressing, they say he is very stable. What does all of this mean? We are just one step closer to transplant. Please keep him in your prayers that this is a slow progression.

Jordan turned 8 in Feb. and had a fun Dance Party. Howard and I had a great time....18 screaming second graders. She did very well in the Variety Show and is looking forward to starting soccer in a couple of weeks. It is her first time in sports. She is very excited.

Hunter is getting so big. He weighs 16 pounds and is moving all over the place. It is so hard keeping the big kid toys away from him. I know he will be walking before he turns one.

Check out the new pictures and I will try not to go so long between updates.

Love,
Melanie

Tuesday, January 1, 2008 7:46 PM CST

Check Out the New Pictures!!!

Happy New Year!!!!

Sooo.. Sorry for the long gap between updates. Being the mother of three has kept me a little busier then I had expected. We had a wonderful holiday season. The children were so cute in their Halloween costumes, we gobbled up a lot of turkey on Thanksgiving and opened too many presents on Christmas. Plus, rang in the New Year at the Great Wolf Lodge. I am exhausted just thinking about it.

AJ has hit a few speed bumps this fall. He has had many colds that have kept him out of school and now we are dealing with a mobility issue. He has slowed down significantly with his walking and is now using a walker to get around. We are increasing our specialist list to help determine the problem and hope to have some answers soon. On another note..His speech is improving and he loves school. He talks about his friends and now enjoys riding the bus. I think.

Jordan is doing well in school. She is preparing for her First Holy Communion, is in the Variety show at school and Brownies. The big news...She got tickets to see Hannah Montana in Concert!!! I can't wait to be at the Verizon Center with thousands of screaming girls.

Hunter is getting huge! I am guessing he is around 14 pounds. He has the biggest brown eyes and looks just like his Daddy. Hunter is constantly being loved by his older siblings and loves it.

Howard and I are doing well. We just celebrated 18 years together today! We were so young when he asked me to be his girlfriend.

AJ has many appointments this month, so I will update when we have more answers.

Love,
Mel

Sunday, October 14, 2007 10:52 PM CDT

Hello Friends,

I know it has been a long time since our last update, but things have been very busy. I will start off with the basics. AJ is doing great! He has healed well from getting his g-tube. I love seeing his beautiful face all of the time and I don't miss the stares. AJ started school at the beginning of September. He loves school!! He is learning his letters, counting to 10 and his speech has just taken off. We are so proud of him.

Jordan started second grade this year and is loving it too. She switches classes for math and is cruising through chapter books. Tomorrow we are going to the library so she can get her own library card. Not only is she busy with school, but she is taking Baton Twirling, Religion and Brownies. Her schedule is so busy!

Our newest edition, Hunter Jason, arrived September 11th, weighing in at 7 lbs. 14 oz. He has a head full of dark hair and looks just like his daddy. He is a very happy baby and healthy too. Big brother and sister are loving him. AJ is always asking, "Hunter go?"

Howard and I are doing well. Howard loves his new job and I am looking forward to going back to work. I promise not to go so long between updates. Check out the new pics!!

Love,
Melanie

Friday, August 17, 2007 2:23 PM CDT

Hi Everyone,

AJ did well during his procedure today. He got his new g-tube and we are settled in our room. Thank goodness for private rooms. Both kids took a nap, while Howard and I enjoyed some peace and quiet. If all goes well, AJ will start being fed tomorrow and we can go home on Sunday. Pray for a quick recovery!!!

Love,
Melanie

Friday, August 3, 2007 1:46 PM CDT

Hello Friends,

I know it has been awhile since our last update. Everyone is doing well. AJ is talking so much these days. We can understand 95% of what he says. The other 5% we guess or ask questions until we figure it out. Eating is still a slow process, but we will get there. Cardiology gave him a good report last month and we will be seeing GI again soon. AJ will actually be getting a new feeding tube in a couple of weeks. He will get a G-Tube, which will go directly into his stomach, on August 17th at Hopkins. We are really excited about this. He will no longer have the one in his nose, which we hope will help out with the eating and less stares too. The idea is to make him look as normal as possible for when he goes to school. This is technically not a surgical procedure, but they will have a surgical team on standby just in case. We will have to stay in the hospital over the weekend to learn how to take care of this new tube, but hope to be out on Sunday because we have already established tube feedings and have all of our equipment. We will update again on the 17th to let you know how he did.


Take Care,

Melanie

Wednesday, June 20, 2007 3:03 PM CDT

Hello Friends,

Yes, we are back!!! I am sorry we did not update as soon as we got home. We have been so busy with end of the school year functions and projects, I have not had time to post.

We had a wonderful time in Florida!! From the first moment of being picked up, to checking in for our flight, to picking up our rental car, to arriving at Give Kids the World Village, AJ and the entire family were treated very well. We were picked up in a stretch limo and AJ could not stop smiling. I think he thought it was cool for all of us to be riding in the back of a car together. Disney was very magical for both kids. They met all of their favorite characters including Buzz, Mickey and Minnie. Our stay at the Village was fantastic! We had our own villa and each day treats were left for the kids. I could go on and on about our trip, but it would take up several pages. Pictures will be posted by the end of the week.

Everything else is great! We have many appointments set up for the next couple of weeks. AJ is in a new big boy toddler bed. I think he likes that he can get out on his own. The first night I caught him in his doorway reading a book by the light in the hall. He is a character! Just like his Daddy!! Jordan is happy to be out of school and so am I. I have been enjoying sleeping in. All is well with me and Baby Hunter. I just had a sonogram today and he is growing well. Even on the big side. Let's hope he is not too big! Howard is busy studying for the next CPA exam and is trying to slip in a round of golf when he can.

Keep checking back for pictures!

Love,
Melanie

Monday, May 21, 2007 9:05 PM CDT

Hello Friends,

Sorry it has been so long since our last update. Everyone is doing well. AJ is talking more then ever. He is asking for food to eat, I mean lick. He loves sports!! Basically, things are good.

We are leaving for AJ's wish trip on Memorial Day. We are all very excited. If you ask AJ where we are going he says "Disney". He will then tell you that he is going to see Mickey, Buzz and Woody. He is going to love it. Jordan is truly excited too. We have been reviewing our books and Jordan has a list of rides and places that she would like to go.

I will give a complete update when we return with pictures. I promise!!!

On another note, we are having a Boy and his heart looks normal. All tests show all of the parts of the heart and everything looks great. The baby is growing well and very active. Now we just have to repaint the kids rooms and make room for baby #3.

Love,
Melanie

Saturday, April 7, 2007 9:26 PM CDT

Happy Easter!!!!

The Easter Bunny has been and gone, but the children are snug in their beds dreaming of what the Easter Bunny has left for them. They will be excited in the morning. We will post some new pictures tomorrow. We just got Christmas, New Years and Birthday pictures back.

Things continue to be stable around here. We went to Hopkins last week and they said AJ looked great. We talked about the feeding program again, but with me being pregnant it may be too difficult. They would like to see him eating before the baby, but I failed my diabetes test so that means more tests for me. Howard, Jordan and I are going to work very hard this summer to get him eating more.

Potty Training has begun. AJ has gone on the potty twice this week. He cried when it happened, but was proud to show off what he had done after he calmed down.

AJ was approved for his wish. We are going to Walt Disney World on Memorial Day and return the following Sunday. Jordan is so excited. Plus, her friend Kendall will be there with her family the same week. I am not sure AJ knows what is going on. We talk about it and ask him if he wants to go see Mickey. His answer is always "yes".

I think that is it for now. Have a wonderful Easter and I hope Spring comes back soon. What is the deal with snow on Easter weekend?

Thanks for all of the messages and continued prayers from all of you.

Melanie

Tuesday, March 13, 2007 6:50 PM CDT

Hello Friends,

We have some exciting news to share. We are expecting our third baby! I am 12 weeks along and due in September. The kids are very excited and Jordan really can't wait to get bunk beds in her room. Jordan and AJ will share a room for a little while. I have had two sonograms and everthing looks good so far. We will keep you posted.

AJ's wish is coming along. We have met with the volunteers and if everything goes well, we should be going to Disney in May. More info to come.

AJ is doing well. His last visit at the cardiologist showed that his pressures are down to almost normal. Yeah!! We go back in six months. Liver numbers are back to his norm and his broken leg has healed. Pray for a few quiet months. Especially September!

Don't forget to check out the new pictures from a couple of weeks ago.

Love,
Melanie

Sunday, February 25, 2007 8:03 PM CST

Happy 3rd Birthday AJ!!!!!!!

We celebrated with a few gifts and lots of snow!!!!

New Pictures! Check them out.

Love,
Mel

Wednesday, February 14, 2007 11:08 AM CST

Happy Valentine's Day!!!

February is always a busy month for our family. Jordan turned seven last week and AJ's birthday is just a week and a half away. We have decided to have quiet birthdays this year with everything AJ has been through in the last few months.

So, AJ is doing well. He had fully recovered from his heart surgery the first couple of weeks in January and then decided to fall and break his leg. His first cast, which went above his knee, was on for three weeks. He had that replaced with a below the knee cast last week. We are hoping to have that removed next week. It was supposed to be today, but the weather did not cooperate. Outside of a few colds and coughs, AJ seems to be back to his normal self. It has been requested that we post new pictures. I promise to get them on here.

The other great news is AJ has been approved for a wish from the Make a Wish Foundation. We are still in the beginning stages, but we are so excited that he qualifies. We are thinking about a trip to Disney. AJ loves Mickey, Buzz and Cars. We will keep you posted when we get more info.

Well, that's it for now. Sorry, for the long wait in between postings.

Love to All,
Mel

Monday, January 8, 2007 8:49 PM CST

Happy New Year!!!

Our year is starting off well. AJ is doing great!! His little personality is back and he is running around and falling on the ground (on purpose) again. You would never know he just had heart surgery 7 weeks ago. We are so happy to have our strong little man back.

We had a very Merry Christmas. AJ loved opening presents! Once he was done with his, he wanted to help with the next pile. Of course, that meant helping Mommy and Daddy with their presents. Jordan was too quick. She didn't need help with hers. Both kids were spoiled and I believe they got everything they wanted. We had a lot to celebrate.

With regards to AJ's big belly...It is still big, but is much smaller then it was. The doctors have adjusted some of his meds to help with that and we will repeat lab work in a couple of weeks. At this time we are not worrying about transpants, because he does not need one at this time. He will remain listed, but in all reality he may not be able to get one because of the severity of the heart condition. But we will deal with all of that when and if the time comes. We will be visiting our doctors again in a couple of months. In the mean time, we will be focused on eating and talking. We are now following a schedule.

As soon as we get pictures developed from the holidays, we will post them. Make sure to check back.

Love,
Melanie

Monday, December 18, 2006 12:43 AM CST

Hello Friends,

AJ is getting back to his old self. He ran a few feet yesterday and even jumped on the bed one time. I think falling back onto the bed gave him a slight jolt and he decided once was enough. We are seeing improvements in his motor skills each day, which tells us he is healing.

Well, I don't want to jinx anything, but his belly looks smaller today. AJ's liver numbers, although still elevated, are around his base line. We see GI in two weeks, so we will see how he looks then.

I am almost ready for Christmas. Decorations are up, presents are not wrapped and cookies need to be baked. I still have a lot to do, I guess I need to get off of the computer.

Thanks for all of the continued love and support sent our way. AJ is a stronger little man because of all of you.

Happy Holidays,
The Koller's

Monday, December 11, 2006 2:25 PM CST

Hello Friends,

We went to the cardioligist today and he said AJ's heart looked good. His pressures are still elevated, but down from where they were before surgery. They could still come down further, but we just need to wait. The only other concern is his big belly. He is retaining fluid in his belly from his liver. This can happen with liver disease and it is our first time dealing with it. We see GI in a couple of weeks, unless it gets worse. He is on a couple of meds to help with it.

AJ is not back to his complete self yet. He is slowly walking around a, but he did help put a couple of ornaments on the tree.

I will update next week to let you know how he is doing.
Thanks for everything!

Melanie

Friday, December 8, 2006 7:12 PM CST

We are Home!!!!!!!

AJ seems happy to be back in his own house and playing with his toys. He even tackled his Daddy.

We are going to have a quiet weekend and give AJ time to get back to his routine. He needs the rest. Next week we will see his doctors to confirm AJ's low pressures.

Thank you so much for keeping AJ in your prayers during the last few weeks.

Love,
Melanie

Thursday, December 7, 2006 7:58 AM CST

Good Day Everyone,

Mel just confuses me when she jumps on and makes an entry. AJ should be released today as long as nothing else comes up. Low potasium, red blood cell count or completely wacked out liver enzyme numbers. (how many things can I misspell) Heart wise he has been fine. The stay last so long because of a virus, high white blood cell count, on a seditive and ends up with withdrawal, and other numbers in his blood draws that are out of normal ranges. So, it takes time to figure out what is the right amount of meds for him. One drug takes off too much protein or depletes his potasium so, they end up replacing it. Hopefully its all done and figured out so they will leave as scheduled. They should be back Friday afternoon and home by dinner. YEAH.

AJ spent the morning yesterday in Pre-school and everytime Mel took him out of his room he wanted to go back. He was even able to make it to the playroom. Jordan loved the rainbow rice they had. When I spoke to him he seemed in better spirits. Gave me a small grunt and a few giggles. Grunts when flexs at me when he wants me to chase him and play.

Thanks everyone

Howard

Tuesday, December 5, 2006 5:34 PM CST

Hey From California!!!!!

AJ is looking great today! If all goes well, we should be out of the hospital on Thursday and home on Friday.

The doctors were moving a little slow today and I feel like we missed out on getting things done for him early in the day. His red blood cell count is low, so they will be replacing that and they are freaking out over small changes in his liver numbers. The numbers are still lower than when we are at home. I think I got my point across that we need to finish his recovery at home. The poor thing has been in bed for two weeks. He needs to get out and play.

Mom arrived this morning, so I have someone to hang out with. Plus, that means we can go out for real food.

I am not sure Howard posted yesterday that AJ's RV pressures are back in normal range. Great news!

Love,
Mel

Monday, December 4, 2006 10:40 PM CST

Good Day Everyone;

AJ is having a good day. Some things the doctors are trying to figure out with AJ. Some of the numbers in his blood work are off and they been busy trying to sort it out.

Mel thinks they should be home by the end of the week. They took out his pacer wires and stiches from his chest tube. So, yeah he is getting closer to being released. Taking out the pacer wires is the last thing they do before letting him go home.

Lets hope they sort things out quick so they can come home.

Howard

Monday, December 4, 2006 8:49 AM CST

Good Day Everyone,

Sorry for the late update. AJ still continues to get wien down on his withdrawal problem. For most of Sunday he did not need any meds for his fever. Which is good but he was feeling bad from his withdrawal. They think that he was being taken off to fast.

We are hoping that Wednesday or Thursaday if all goes well he will get released. Mel says he doesn't have his strength back. He had a hard time standing, but who wouldn't after recovering from surgery and dealing with a bad virus at the same time.

Jordan is excited about getting back to school and taking Jelly bellies to her classmates.

Thanks for everyones prays and well wishes.

Howard

Saturday, December 2, 2006 8:32 PM CST

Good Day Everyone;

Jordan and I made it home safe. Nothing eventful has happended with us as we get ready for a normal week. Think its time for us to get our decorations out and have the tree ready to be decorated when Mel and AJ finally come home.

AJ and Mel had a mostly uneventful day. His Fever keeps coming back and he is on around the clock Tylenol and Motrin to keep it at bay. We have heard that none of his cultures have grown anything. Guess it comes down to him recovering from surgery and trying to deal with a bad virus. He did give Mel and Hospital staff a scare when his heart rate shot up to 260 then down to normal then back up to 180. He is fine and EKG showed nothing. Mel did say he smiled when I tried to speak to him on the phone. Just figure he smiles now when I am 3000 miles away and can't see it.

Thanks everyone for your prays and well wishes. He just needs his rest and hope that he can get it this weekend so they can come home quickly.

Look at the new pictures. Jordan had fun at light the night evening at the hospital.

Howard and Jordan

Friday, December 1, 2006 12:05 AM CST

Only 24 more shopping days until Christmas. Happy December!!!!

Well, I spoke too soon yesterday. AJ still has a fever and he is not happy. We had some issues with care last night and what should be done for him and the doctor is addressing that for me today. They think this infection may be viral. Since he still has a fever and the antibiotics are not working they are going to take a viral culture and he may even get a private room. Yeah!!!! That means I get to stay with him.

We just found out a couple of days ago that they had school for older children and Jordan went yesterday. She loved it. I wish we knew about it at the beginning of the week. She is in Art class now and will go to school this afternoon and to the playroom. She is having a great time.
I am sure she can't wait to get back to her school with her friends.

Howard is taking the computer home with him, so he will be updating for me unless I can get on the computer here.

At this point, I don't know when we will be coming home. Please pray that it will be soon.

Love,
Melanie

Thursday, November 30, 2006 6:33 PM CST

Hi-

I am updating a little early today. Taking advantage while Howard is still here. Anyway, we are finally out of the ICU. Now we are upstairs in the IICU, which is basically a quieter ICU. He will get the same level of care and we are one step closer to coming home.

AJ was going through withdrawl from a sedative. They now have him on another medication to take the edge off and hopefully will be put on a schedule to wean him. AJ is a totally different child on this medicine. He was playing, talking and very happy. He also has not had a fever since this morning. Keep your fingers crossed that it does not come back.

We are also waiting for results from an ultrasound of his liver. I am hoping that there is no or little cirrhosis.

Tomorrow is our last day with Jordan and Howard here in California. Mom will be heading out next week if it looks like AJ will be released.

Love to All,
Mel

Wednesday, November 29, 2006 11:54 PM CST

Hello Friends,

We are checked into the Ronald McDonald House and will be unpacking tonight. Jordan is so excited! She has already met a friend.

AJ is still fighting this fever. He is still in the ICU. They feel he needs to be watched over at least one more night. We did have one good hour today were AJ was talking, laughing and playing. We thought we were on the road to recovery. After his nap the fever spiked up again and he is not himself. He just looks very sad. We hope to see improvement tomorrow. Please pray for this fever to go away.

There is talk that we will be moving to the step down ICU tomorrow. We will see.

Thanks for all of the wonderful messages.

Love to you all,
Mel

Tuesday, November 28, 2006 9:32 PM CST

Hi Friends,

AJ had an OK day. He is still fighting a fever. They pulled out his last chest tube and are pulling his IV that could be the infection. We will see what tomorrow brings. The docs say that he would be ready to leave, if only he didn't have a fever. It is good to know that the fever is our last battle. I hope.

We are moving into the Ronald McDonald House tomorrow. I am here at the hotel packing, while Howard is back at the hospital with AJ. Tomorrow afternoon we check in. Jordan is so excited to stay there. They have a playground!!!

Love,
Mel

Tuesday, November 28, 2006 2:00 AM CST

Quick Update Tuesday, 7:30 A.M.

AJ had a rough night fighting this fever. His white blood cell count is up and they finally started him on two antibiotics. Hopefully that will take care of any infection he has. Lots of prayers today.




Good Morning Everyone-

AJ had a quiet day on Monday. He was moved to another part of the ICU, which is one step away from moving upstairs. AJ is off all of his heart medicine and they are working on getting him back to his normal feeding schedule. The doctors even talked about sending him upstairs tomorrow.

Speed Bump!!! AJ developed a fever this afternoon and it went up again tonight. Hopefully, they will keep it under control with medicine. This may also extend his stay in the ICU. We will see what tomorrow brings.

The other news...AJ had an ECHO and it showed his pressures were still elevated. What does this mean? We are not sure yet. He was still on heart meds when they did the ECHO and Dr. Hanley said that the meds would keep his pressures up. We may not know the true pressures until he has another ECHO after we get home. Pray they did the ECHO too early here.

Thanks for all the Happy Birthday messages to Howard. He appreciated all of them.

Love,
Melanie

Monday, November 27, 2006 0:45 AM CST

Happy Birthday Howard!!!!

AJ was extubated Sunday afternoon! Yeah!!!!! He is doing great! He is still a little out of it from all of the meds still in his system, but he was awake all evening with us. We finally were able to sneak out around 10 P.M.

Now that the breathing tube is out, we will be spending most of our time with him. Jordan is excited to be going to the playroom at the hospital and I look forward to getting AJ fully recovered so we can come home.

Howard posted some new pictures of AJ, still with the breathing tube. We will take new pictures tomorrow without the tube.

Thanks for all of the messages. We now have 10,000+ hits on our website. Thanks for being such great friends.

Love,
Melanie

Saturday, November 25, 2006 2:26 PM CST

Quick Update...

AJ is doing well today. With a few adjustments, he had a good night. X-ray looks better, kidneys look better and he is breathing better with the new tube. Today is a rest day for him and we hope for him to be off the breathing tube tomorrow. Keep your fingers crossed!

We are off to lunch and to the movies. Have a great day!

Love,
Melanie

Friday, November 24, 2006 11:55 PM CST

Hello Friends,

AJ had a rocky day. His x-ray this morning showed quite a bit of fluid on the left lung. They started some therapy for that and by this afternoon the x-ray showed some improvement. AJ's kidneys have taken a hit from all of the lasix, so they decreased that and his kidneys seemed to have bounced back. They also replaced his breathing tube with a smaller one to avoid anymore irritation on his trachea. With a smaller tube in, they are struggling with keeping him properly ventilated.

After all of that, he did look calm tonight. However, he is not fully sedated. When we are there, he gets upset and tonight he even called for mommy. Normally, with a tube in you can not hear any crying or sound. With this smaller tube in, some sound is coming out.

I hope everyone went out this morning to experience Black Friday Shopping. Howard and I missed it. We talked about getting up early to shop, but how would we get everything home. We did get to a mall today and it was crazy. I have never seen people tear apart the Disney Store like that before. Jordan enjoyed shopping at the Lego store. She got her first set of Girl Legos and loves them. She has not stopped playing with them all day.

Thanks for all of the messages and prayers. It is great to feel so connected so far away.

Love,
Melanie

Thursday, November 23, 2006 8:19 PM CST

Happy Turkey Day!!!

We have so much to be Thankful for this year. AJ is doing great!!! He was awake this morning and opened his eyes for us. AJ would get upset and his heart rate would go up and then we would use a pacifier to calm him down. He even managed to get one in his mouth with the breathing tube.

The doctors say he is doing well, given the length of his surgery and the amount of work that was done. We are still taking it one day at a time, but are hoping for a quick recovery.

We have requested an ENT consult to address the narrowed trachea, but the doctors today did not seem too concerned about it. We hope to get more info on this over the next couple of days.

Thanks again for all of the wonderful prayers and messages. We are so grateful to have such wonderful family and friends.

Love to All,
Melanie

Wednesday, November 22, 2006 10:54 AM CST

Hello Everyone,

Last Update for the night...10:30P.M.
We finally got to see AJ about 9:00 tonight. They kept him in the OR to keep an eye on some bleeding. With some extra platelets and medications the team was able to get it under control and finally closed him up. The bleeding is common because of the scar tissue and his liver issues. The other thing they discovered was AJ's trachea is narrowed just below the vocal cords. While putting in the breathing tube, they noticed it was tight. The doctors will be paying close attention to this when taking out the breathing tube and will be consulting with an ENT. It may be something that has to be taken care of before we leave Stanford. This could be the result of having a breathing tube too many times. So, overall AJ looked good. He only has two chest tubes this time, but his IV's are in his neck this time. He is a difficult stick. The plan for AJ is to keep him calm and quiet for the next couple of days. He needs to heal. We hope to get a good night sleep tonight. Jordan fell asleep as we pulled out of the parking lot. She is exhausted. Thanks again for all of the prayers!!! We felt each and every one.

5th Update 6:55P.M.
Yeah, AJ is out of surgery. We have not gotten the opportunity to see him but we did get to see his surgeon Dr. Hanley. He was able to open up 6 arteries on the right side and one on the left, plus they had to replace his valve. He was on bypass for 3 to 4 hours, so we will see what kind of hit his liver will take. Normally, it bounces back after a few days. His presures are down and it is hoped they come down further once he is off the heart medications. It was a long surgery with a lot of work being done. We are very excited that everything went smoothly for him. We like to thank everyone for the prayers and positive thoughts.

4th Update 3:45P.M.
Just got word that they are on the last of the arteries to enlarge and then he will replace the conduit(valve). Estimated time 3-4 more hours.

3rd Update 3:05 P.M.
There is no estimated time yet for the surgery to be over, but AJ is doing well. Thanks for the prayers!!

2nd Update 2:45 P.M.
We have not heard anything yet. We have asked for an update, but the person who does that is very busy. It may be awhile before we get any info. Usually, no news is good news. In the mean time, we have reconnected with the Chaplain and Social Worker. Both could not believe how big AJ is. More info to come.

1st Update
As I said earlier, we will update throughout the day. It is almost 9:00 A.M. here and they just took AJ back to the OR. He was not happy. They gave him some medicine to help him relax and to fall asleep and he was fighting it. They even gave him a larger dose today and it still did not knock him out. That tells you how strong he is.

We spoke to Dr. Hanley and he will be working mostly on the right side and will probably fix the one artery on the left. He will also replace his conduit(valve). He said it is working, but is leaking. They probably will not be done until late afternoon. He said it was alot of work.

Please pray that AJ's surgery goes smooth and all of Dr. Hanley's hard work helps reduce those elevated pressures.

Love,
Mel

Tuesday, November 21, 2006 9:01 PM CST

Hello-

We had a great day at the Jelly Belly Factory. AJ really enjoyed looking at all of the machines and Jordan always enjoys her jelly bean shaped hamburger. Check out the pictures!!!

Tomorrow is the big day. I am so glad AJ is still small enough that he does not know what is going to happen. At least he is not worried.

We tested the new wireless in the hospital yesterday, so we are excited that we can update throughout the day.

Please keep AJ in your prayers tomorrow.

Love to All,
Melanie

Monday, November 20, 2006 9:50 PM CST

Hello Friends,

Today did not go as smooth as I had imagined, but we made it through. There are always a few bumps in the road and we managed to deal with each one. AJ did very well in his cath and lung scan. He has 5 narrowed arteries on the right side and one on the left. We will speak to Dr. Hanley before surgery to get the surgical plan. We actually saw him today and he thought AJ was so big.

After a long day at the hospital, AJ was finally discharged and we can relax for the rest of the evening. We will do something fun with the kids tomorrow and then AJ has to be at the hospital at 6:00 A.M. on Wednesday.

Have a great day!
Melanie

Sunday, November 19, 2006 6:29 PM CST

Hello-

We arrived in sunny California early this morning and are quite tired from our trip. We have tried to rest today, but with two children taking cat naps at the wrong time, we did not get the extra sleep that we all needed. It will be an early bed time tonight.

AJ has a big day tomorrow with several procedures scheduled. I expect the day to be long, but to go smoothly. I will update tomorrow afternoon and let you know how he did.

Howard added pictures. They are huge!!! The program would not allow him to resize the pictures.

Take Care,
Melanie

Friday, November 17, 2006 10:20 PM CST

Hi Friends,

We are busy packing for our big trip out west. Sorry we have not posted new pictures of the kids. We were having some technical difficulties with our cameras on Halloween. Howard will get them up this week when we are in CA. The weather this week....Sunny and in the 60's. Not to bad for Northern California.

We fly out Sunday morning...Early. Howard wants to be settled in the hotel in time to watch Dallas play. Monday AJ has an Echo, lung scan and cath. We hope he will be released from the hospital that day. Tuesday should be a free day for us and Wednesday is the big day. There is wireless in the hospital now, so it our plan to update throughout the day. Thursday is turkey day and we will be having dinner at a local restaurant after the Dallas game.

As usual, we will update once we are there and hope all of our loved ones will send us messages.

Thank you so much for all of the prayers, kind words and support from friends and family. It means so much to us during this time.

Love to all,
Melanie

Friday, October 27, 2006 10:22 AM CDT

Hi Friends,

Plans have changed again. AJ's surgery has been postponed until Nov. 22nd. The CVICU at the hospital is so full that this weeks surgeries were pushed to next week and have delayed everyone's surgeries. We will leave on the 19th and hopefully be home at the beginning of December.

The bright side is we will be here for Halloween and some school activities that we were going to miss.

We will update after Halloween with new pictures.

Take Care,
Melanie

Wednesday, October 18, 2006 8:40 PM CDT

Hello Friends,

Well we are trying to get ready for our trip out west. Our plans have changed slightly. AJ needs to have another cath before surgery and Dr. Hanley wants it done in California. So, we have to fly out before Halloween. We are now leaving on October 29th, Grandma's Birthday. Happy Birthday Grandma!!!!!

In the mean time, we are busy with work, school and everyday tasks. I will update one more time before we head out.

Check out the new pictures!!!

Love,
Melanie

Monday, September 18, 2006 7:57 PM CDT

Hello Friends,

It has been awhile since I last updated. Everyone is doing well. Jordan is back in school and is loving first grade. AJ is back in class too and always enjoys himself. He has made great progress in the past six months since he started.

Well we finally got the answer we have been waiting for, California here we come!!!! AJ is having heart surgery #4 on November 3rd. Dr. Hanley feels he can open up AJ's arteries to help lower his pressures and take the stress off his heart. Say lots of prayers!!! Howard, Jordan, AJ and I leave Nov. 1st. As always we will update daily while we are there. My understanding is there is wireless in the hospital now. Yeah!!! That means we can have the computer with us on the day of surgery and update throughout the day.

I am sure I will update the site one more time before we leave and I promise to put new pictures on. I am sorry for the delay. Howard has to do it because, I don't know how to. Plus, we did a big ooops and erased the pictures on our digital before downloading them. We will never do that agian.

Take Care,
Melanie

Wednesday, August 2, 2006 9:09 PM CDT

Hello Friends,

We have had a very busy summer so far. AJ and Jordan joined me at summer camp for two weeks in June, Jordan attended swim lessons and Vacation Bible School in July, we just got back from the beach and we will be leaving for Williamsburg in a week. I thought the summer was suppose to be relaxing.

AJ had a huge week of firsts at the beach. He began to tolerate the sand on the beach by digging in the sand with a shovel and dumping it into a truck. He was fine until the sand touched his hand or leg. AJ also went on his first ride at the boardwalk. He loved it!!! He loved it so much that you could not get him off of the rides. I know who my dare devil is going to be. The last big first was going in the baby pool. Normally, he hates the pool. I even tried putting his feet in the water and he pulled his legs up so they would not touch the water. Then after watching Jordan and their friend Jack playing in the pool, he became interested. By the end of the day he had spent at least an hour in the pool. We are so proud of him.

Since our last entry, AJ has gained a couple of pounds and looks taller too. We went to the cardiologist today and he said he thought he looked great. Pressures are still up, but that is not going to change. Our surgeon will present AJ's info to his team next week, so we hope to hear his opinion soon.

Thank you so much for all of your continued thoughts and prayers for AJ and our family. We would never have gotten this far without you.

Love,
Melanie

Wednesday, June 7, 2006 7:45 AM CDT

Hello Friends,

I hope all is well with everyone. AJ continues to make great strides with his eating. We are now eating all of our food off of a spoon. Yeah!!! He is also willing to take water from a straw. He just has to learn how to suck the water through the straw.

We have visited many doctors over the last couple of months. GI said that his liver is still stable, but his spleen is still enlarged. This is something we have to keep an eye on. It could mean that a transplant is closer then we think. They are giving us a year to get him eating and gaining weight well before they send us to the feeding program next summer. Keep you fingers crossed that he gets bigger.

AJ has also seen his cardiologist a couple of times too. AJ's RV pressures are up, so he had a cardiac cath yesterday morning to take some pictures and do some ballooning. AJ did well, however we have mixed feelings about the results. AJ can live for years with high pressures, but it will cause damage to the heart and there were already signs of stressing. AJ's arteries that the doctors can reach look good, but the arteries in the lungs are still very small and you can't fix those. The only solution would be a lung transplant. The doctor is sending this new info to Stanford and will present it to his team here. It may mean that AJ may have to go in for another cath to have some stints put in, we might have to go back to California for another surgery, or we just wait and let AJ grow. Please pray for some good growth and for those pressures to come down.

We have a busy summer ahead of us. We are traveling to the beach and to Williamsburg, plus a day trip here and there. This weekend Jordan will be in her first dance recital and we will be taking AJ to his first movie at the theater. AJ loves the trailers for the new Disney/Pixar movie "Cars". I hope he does well.

I will update again when we get more info.

Love,
Melanie

Sunday, April 16, 2006 9:56 AM CDT

Happy Easter!!!!

Everything is great with us. We will be celebrating Easter at Grandma's house today. Plus, we are celebrating my Grandfather's 85th Birthday today!!! Happy Birthday PopPop!!!!

AJ went to the cardiologist this week. He said that his heart looks good. He probably will not need another surgery to replace his valve for a few years. He will have to have a cath in the next couple of months just to make sure everything looks good. Our GI appointment is at the end of next month.

We are not going to Kennedy Kreiger. AJ is doing so well with his eating that we are going to wait and see what happens. AJ is eating a variety of foods including fruits, vegetables and meat. He is doing really well.

We will update again soon!

Love to All,
The Kollers

Monday, March 13, 2006 8:10 AM CST

Hello Friends-

AJ is walking!!!!! Wow! Having him walk puts us in a whole new world. I forgot what it was like to have a mobile toddler. He does really well at aftercare walking to the kids. AJ enjoys playing on the playground and going down the slides. He even tries to walk up the slide on his own. He went to his friend Dalton's birthday party yesterday and was running all over the mats and even walked on a balance beam(with assistance).

AJ's speech has improved as well. He repeats everything we say and talks all of the time. Last night we were watching TV and he was making all sorts of animal sounds. Now that he is walking his speech should take off.

Here is the eating situation. He eats bananas, carrots and applesauce. AJ takes about a tablespoon everytime he eats. Now we are working on drinking from a cup. His formula was just changed so he has to learn to drink this new one. Baby steps. We go back to Kennedy Kreiger in April. We hope to have him taking in enough food that we won't have to do the inpatient program.

AJ is still stable at this point. We visit his cardiologist in April and back to GI in May. The one thing that we are working on right now is his high cholesterol. 1500!!!!! It makes our just over 200 look like nothing. This high level is due to his liver condition. The doctors are considering putting him on a medication to help lower it, but will have to keep an eye on his liver numbers.

We are right in the middle of tax season, so we don't see Howard too much. I, of course, am still busy with St. Patrick's and St. John's. I am no longer doing Highlights. Life is too busy. Jordan is loving Kindergarten. She is learning to read and is always asking me to work with her.

This past week we had some sad news. AJ's little friend Kevin, who has the same heart and liver condition as AJ, passed away. Kevin was two years old and had been through so much. Please keep him and his family in your prayers. Their website is www.caringbridge.org/md/kevinmclane.

Take Care,
Melanie

Wednesday, February 1, 2006 11:56 AM CST

Hello Friends -

We have a very busy month ahead of us. Jordan will be turning 6 next week and AJ will be 2 on the 25th. We have parties planned and a lot to celebrate.

AJ is more confident with his walking. I am sure he will be running before we know it. His eating is coming along slowly. Yesterday, he ate bananas without fussing too much. Today, we went to the doctor's and AJ has made it to 23 pounds. Yeah!!!! I knew he felt heavier.

AJ will now go to a group therapy session starting next week. He will receive physical and speech therapy all in one session and have the opportunity to play with other children. It will be good for him to detach from me. Parents stay in an observation area during the session.

I hope everyone has a wonderful month.

Take Care,
Melanie

Sunday, January 1, 2006 7:29 PM CST

Happy New Year!!!!!

Both AJ and Jordan brought in the New Year with Grandma last night. They had a great time playing with their Christmas presents and blowing New Year's horns.

Christmas was wonderful!! Santa was good to everyone this year. AJ received alot of cars and trucks. Jordan received a desk for her room and Barbies.

AJ is doing well. He still will only take a few steps at a time and that is usually to one of us. I am sure it will not be long until he is walking on his own. We visited Kennedy Kreiger a couple of weeks ago for an evaluation. There was an entire team of doctors, therapists, etc. that evaluated AJ and basically said that he needed a few more skills before he would qualify for the inpatient program. However, we will be going back for an outpatient session next week to learn how to work on these skills. Yeah!!! We can use all of the help we can get.

I hope everone had a very Happy Holiday and safe New Year!

Love to All,
The Kollers

Sunday, December 11, 2005 6:37 PM CST

Hello Friends -

AJ is doing well. He took his first steps by himself a couple of weeks ago. We were so excited!!! Now we have to get him to do it again. He has his appointment at Kennedy Kreiger on the 20th to evaluate his eating. I hope to get some good info that can help us.

With some happy news comes some sad. My father, Dennis Gaddis lost his battle with cancer this past week. He was 57 years old. He will live in our hearts forever.

I will update again soon.

Melanie

Monday, October 31, 2005 9:00 PM CST

Happy Halloween!!!

I hope everyone had a great Halloween. Jordan was a princess and AJ was Tigger. He was so cute! He rode in his car and dragged his pumpkin filled with candy along the sidewalk. If AJ didn't get to the door, Jordan would ask for an extra piece for her brother. She loves him so much.

We have been to see our doctors this month. His cardiologist thinks he looks great. He does not want to see him back for six months. At that time, he will do a Cath to see how things look. We went to Hopkins on Friday and his liver is still very stable. The question of whether or not he will ever require a transplant remains a mystery. It does not look like it will be anytime soon. That is fine with us. However, his eating or lack there of was a huge topic of discussion this time. Howard and I feel we have hit a brick wall with AJ when it comes to him eating. Some weeks we make progress and the next he fights us. It has been recomended that we go to Kennedy Krieger in Baltimore for a 6 to 8 week inpatient program to get him eating. I was shocked at this news. I thought maybe we could do an outpatient program, but they feel if he is there all of the time he will make better progress. With a waiting list and the concern of AJ being in a hospital setting during flu season, this will probably happen late winter early spring. In the mean time, we hope to get into a weekly program there. The ultimate goal is to get him off of the tube completely.

Check out our new pictures.

Love to All,
Mel

Wednesday, October 5, 2005 8:32 PM CDT

Hello Everyone -

Our family has had a very busy few weeks. We are not moving now. Mom is staying in her house and we are staying in ours. As much as we wanted a single family home, we are thrilled to be staying on our street with our wonderful neighbors. Maybe in a few years we can think about moving again.

AJ is doing great. We are making good progress with eating. He is tolerating baby food watered down in a syringe and on a spoon. Plus he loves water! But it has to come from a syringe. We received some great news a couple of weeks ago too. AJ had his lung scan and it showed that he has 62% blood flow to his right lung and 38% to his left. His last scan showed 75% to the right and 25% to the left. Normal flow would be 55% to the right and 45% to the left. I hope I am not confusing you with all of these numbers. Bottom line is his blood flow has normalized for him and that is good news for long term prognosis. It also means that his arteries are probably open and may even be growing. Yeah!!!!! We will be visitng our doctors over the next couple of weeks.

Jordan is doing great in Kindergarten! She loves it! She has a great teacher and is making many new friends.

Take Care,
Melanie

Thursday, September 22, 2005 9:02 PM CDT

Hello Friends -

AJ is doing well. Over the last two weeks he has shown signs of getting stronger and more stable on his feet. He will now take a couple of steps with holding on with one hand. He also figured out how to climb into the chairs in the living room and how to come down the stairs the correct way (on his tummy). I think he just went through a small but significant growth spurt.

We are still working on eating. We are making slow but steady progress. At least he does not scream at the sight of a spoon anymore. He just screams if there is food on it.

Howard and I have been very busy. Our house went on the market a couple of weeks ago and sold in seven days. Then, the buyer had a change of heart. So, we are back on the market again. Pray that our house sells quickly.

We will be meeting another family this weekend whose son has Alagille Syndrome. I believe the boys also have the same heart condition. It's always nice to speak to other families who are going through the same things.

Last weekend Howard and I took AJ and Jordan to their first Orioles game. Johns Hopkins Transplant Unit invited all pre and post transplant families to the game. We enjoyed a party and good seats. AJ and Jordan did very well. I will have Howard post the pictures.

We have our cardiac and liver appointments in October. I can't believe October is almost here. Next will be Halloween and our family moving. By the way, AJ will be Yoda for Halloween.

Love to all,
Melanie

Tuesday, September 6, 2005 8:45 PM CDT

Hello Everyone

Well we really don't have a lot to report. AJ continues to be stable. He continues to develop and do new things. I had the chance to watch him climb up stairs. It is wonderful to see him get stronger.

I have updated his photos. In August Melanie, the kids and I had a chance to go to the beach. Jordan enjoyed the water and pools. AJ seem to enjoy his time at the pools. He was not to fond of sand.

Enjoy the new pictures. Sorry I did not get them up sooner.

Howard

Thursday, September 1, 2005 11:23 AM CDT

Hello Friends -

We have had a very busy couple of weeks. Jordan started Kindergarten this week. She loves it!!! Jordan enjoys riding on the bus and playing in centers at school. The only thing she complains about is no snack time. Things could be worse.

The other exciting news is "We are Moving!" Mom is moving to Annapolis and Howard and I are buying her house. Our house goes on the market next week. We have been very busy painting, cleaning and getting rid of the clutter.

AJ is doing well. He is adjusting to Jordan's new school schedule. He is getting up earlier so we can walk Jordan to the bus stop. I think he truly misses his big sister in the morning now. He is thrilled to see her in the afternoon after his nap.

I have met a new family in the area whose son has the same heart and liver disease as AJ. We have been in touch by email and I hope we can get together soon. It is nice to know another family that is going through the same things.

I will update again soon.

Love,
Melanie

Thursday, August 18, 2005 9:36 PM CDT

Hello Friends -

We have had another good month. AJ's doctors appointments went well. His GI doctor said his liver is stable. They want to see him back at Hopkins in three months. Yeah!!! The cardiologist says his heart is stable too. AJ will need a lung scan in September to measure blood flow and we hope that it is the same or better since his surgery in January. If things look good then we have a few more months until he has to have a cardiac cath. The cath can be done here and would primarily be used as a diagnostic tool. Even though AJ is doing really well, they want to make sure that he stays that way.

We continue to work on oral feedings. It is a work in progress!!!! His speech therapist says he is making progress. He is swallowing water well and is even tolerating some food without gaging. She also evaluated his speech and cognitive abilities. His speech is around a 12-13 month old and his cognitive ability is right on target for his age.

We just got back from the beach. Jordan loved it!!! AJ did not like the sand. Howard played a little golf and I worked on my cross stitch. We spent time with several friends and family and had a relaxing vacation. We will post pictures soon.

The new school year is upon us. Jordan is starting Kindergarten in a week and I go back to work a week after that. I expect life will get very busy.

Love to All,
Mel

Sunday, July 17, 2005 8:34 PM CDT

Hello Friends -

AJ has been very busy this last month. He has learned how to sit up from a laying down position, how to crawl up stairs and how to crawl on his hands and knees. He is a very active boy. He goes to all of his doctors over the next two weeks, so we will see what they have to say.

We are still working on oral feedings and are making some progress. He likes to drink water(sometimes), but is still not thrilled with food. It is a long process.

We took a family vacation to Ohio a week ago and had a great time. I went to a Highlights-Jigsaw Convention and then we visited with Grandad and Gramps. Jordan and AJ loved hanging out with them. Howard posted some new pictures from our trip. Check them out!!

I will post a new message after we have visited with all of the doctors.

Take Care,

Melanie

Thursday, June 9, 2005 9:34 PM CDT

Hello Friends -

Mel has been busy working 3 different jobs the past couple of weeks and we just had not had a chance to update our site. We have taken some new pictures of AJ and Jordan. Hope everyone enjoys them.

AJ has continued to progress with his health. He is stable and is doing as well as can be expected. Right now we just wait and see how his liver progresses. AJ has continued to gain weight. Mel continues to work with AJ with his eating and physical therapy. Seems like the best time to feed him is when he is taking a bath. Water can be a wonderful distraction.

All of us did get a chance to get away. We did a mid week getaway in May to the Great Wolf Lodge in Williamsburg. For those with kids, it is a wonderful place to go. The whole family enjoyed the indoor water park they have. It was hard to get Jordan out of the wave pool. When we left to see the area, all she wanted to know is when we would be heading back.

Howard

Sunday, May 22, 2005 9:35 PM CDT

Hello Friends -

Everything is going well. AJ is getting bigger everyday. I can't wait to go to the doctors this week to find out how much he weighs. I will update his medical info after the doctors appointments at the end of the week.

In the mean time, AJ is crawling faster and loves to chase his sister when he is in the walker. We are even experiencing, "Mom, AJ hit me." We knew it would happen sometime.

Our vacation to the Great Wolf Lodge was Awesome!!!! We recommend going in the middle of the week. It felt like we had the place to ourselves. Jordan loved it!!! She spent most of her time in the wave pool. Howard and I enjoyed the raft rides and the lazy river and AJ had his first pool experience. He enjoyed the baby pool. We are already planning to go back next year.

This weekend was Olney Days and we took part in some of the activities. AJ saw his first fireworks and did fine. We also enjoyed a beautiful day at the parade.

Look for another update next weekend. Howard will post some new pictures too.


Love,
Melanie

Monday, April 25, 2005 1:38 PM CDT

Hello Friends -

AJ is 14 months today. I can't believe how fast time flies.

AJ is doing great!!!! In the last couple of weeks, he has learned to walk around holding on to someones fingers and learned to crawl yesterday. We were so excited to see him crawl a couple of feet(a long distance for him)to knock over a tower of blocks. I am going to have fun chasing him around with a feeding bag. Do you think we can teach him how to pull around his feeding pole? It will be awhile before we get to that point.

He is quite the little chatterbox. He trys to repeat what you say and his favorite saying is ma ma. We are working with a speech therapist on oral feedings now. Our hope is to get him eating soon.

Love to All,

Melanie

Sunday, April 10, 2005 7:51 PM CDT

Hello Friends -


We have had a very exciting and sad week. AJ is doing great! He has learned how to clap his hands and he is saying ma ma. He is such a smart little boy. We are thrilled with his progress.

With great news comes some sad. AJ's friend Colin passed away on Monday, April 4th. We have only known this family for such a short time, but feel like we have known them for years. Please keep Colin and his family in your thoughts and prayers this week. I have included a portion of his obituary.

Colin Joseph Zeitler
2004 - 2005

Colin Joseph Zeitler, age 8 months, ended his courageous fight with hypoplastic left heart syndrome on Monday, April 4, 2005. Colin passed away peacefully at Lucile Packard Children’s Hospital at Stanford University in Palo Alto, California. He was born there on August 17, 2004.

An eight month resident of the Cardiovascular Intensive Care Unit, Colin was immensely loved by his family, friends, and hospital staff. He showed great strength and much determination during his short life. His life touched the hearts of many, and he will be greatly missed by all.


Love,
Melanie and Howard

Friday, April 1, 2005 8:52 PM CST

Hello to everyone,

We wanted to share some new firsts for AJ. Mel and I are happy to see AJ progress so much since his last operation. AJ continues to get stronger. Melanie continues to work with him on his exercises and eating. He is eating pears and carrots with a spoon. AJ has started to tolerate being on his stomach more often and has become more active.

AJ has learned to say yes and no by shaking his head and he waves bye bye and hello. He also raises one arm in the air for so big (Howard's favorite).

Today, was a huge day for firsts. We went to the park with friends and AJ went on the swing and slide for the first time. He also sat in the grass for the first time. That didn't last long. We went to lunch, where he sat in the restaurant highchair for the first time. AJ normally sits in his carrier when we go out to eat. He loved it. I think he enjoys feeling like a big boy. We are even going to move him into a regular car seat soon. He is just too big for the carrier. Check out our new pictures. There are some from today at the park and from his first bath in the big tub. One of my favorite pictures.

Please continue to keep Colin and his family in your prayers. For more info, please read the last entry.

Howard and I wrote this entry together, so I hope it wasn't to challenging to follow. We will update every couple of weeks or when we have new info.

Love,
Mel and Howard

Wednesday, March 30, 2005

Hello Friends -

Tonight, we are asking for all of our friends and family to keep AJ's friend Colin in your thoughts and prayers. Colin has been at Stanford Hospital since he was born. We met Colin and his family in October and were thrilled to see them again in January. We just got word today that he is not doing well. We are heart broken over this news and ask everyone to pray for him and his family as they go through this difficult time.

Please read on to get an AJ update. It is the same update from last week.

Happy Easter!!! I hope everyone is looking forward to Spring. I know we are. I can't wait until we can play outside every day. We are planning a trip to Williamsburg for a couple of days after tax season to help all of us relax. Jordan is very excited because the hotel has an indoor water park.

I have a lot of new info to share about AJ. He is doing great! He now weighs in at 17 pounds 3 ounces and is over 27 inches long. He continues to get stronger everyday. He can stand up while holding onto something and we are working on getting him to crawl. He just does not know what to do with his feet yet.

We have had lots of doctors appointments this month. His cardiologist says he looks wonderful. AJ still has some collapse of his left lung that may never reopen. It's something we will keep an eye on. AJ's GI doctor thought he looked great and is thrilled with his weight gain and growth. If we can get him to eat by mouth, than we can unhook him from the feeding tube during the day. I am so excited about this, but we have a lot of work ahead of us.

Since AJ is doing so well, we have no appointments next month. Yeah!!!!

Howard and I are both very busy. Howard is working extra hours because of tax season. He is tired, but loves working with those numbers. I am working hard at school and am starting up my own home business. Even with our busy schedules we have still made time to go see a couple of movies, visit with Howard's brother and family and just enjoy everyday with Jordan and AJ.

We will be adding some new pictures in a couple of days. AJ took his first bath in the big tub last weekend. He loves it. Enjoy!!

Love to All,

Melanie

Monday, March 7, 2005 2:35 PM CST

Hello Friends -

AJ continues to grow bigger and stronger. He is now up to 16 lbs. and is putting more weight on his arms and hands. AJ is rolling all over the place. Today, Jordan caught him rolling under chairs in the living room.

We made it through the SuperFriends Birthday Party last weekend. We had a house full of kids and they had a great time.

AJ has a few doctor's appointments at the end of the month so, we will have to wait to see how things are going for him.

Thanks for all of the wonderful birthday messages. I really need to get busy working on Jordan and AJ's scrapbooks.

Love to All,

Melanie

Friday, February 25, 2005

Happy Birthday AJ!!!! Happy Birthday AJ!!!!!!


We are so excited to celebrate Austin James "AJ" Koller's first birthday! We never thought this day would come and now it is here. AJ is such a strong little man. We can't wait to see what the future holds for him.

Howard and I want to thank all of our friends and family for your support through this year. We love you guys! We would never have made it without you.

Please post a Birthday message to AJ today. I will print them out and post them in his scrapbook.

We would also like to say Welcome Home to Uncle Harry. Howard's brother is home from Iraq for a couple of weeks. We can't wait to see him.

Love to All,
Mel and Howard

Monday, February 21, 2005 9:02 PM CST

Good Day to everyone

Thank you for keeping up with our little man. Can you believe he will be ONE on Friday. Wow... what a year! Four surgeries and many diagnostic procedures later and he is just a smiling boy. Most know Jordan laughs a lot. Well, AJ just seems to always have a smile.

I posted some new pictures again of AJ and Jordan. Melanie took out his feeding tube so she could put in a new one. So, she thought she would take the opportunity to take some pictures of him with out it.

As I hope you can see, AJ is doing well. He is slowly getting back to his pre-surgery self. This week he starts back up with his physical therapy. Yep, its time to work with him and help him get back up to speed. We are hoping nothing else happens for awhile.

We have added a link to other web sites today. This link is about a baby that weighed 700 grams and had heart surgery at Stanford while we were there. We actually saw the baby. Check it out if you get a chance.

Thank you for your support.

Howard

Friday, February 18, 2005 9:35 PM CST

Hello Everyone

Now that we have had a chance to settle in, AJ is doing well. He is starting to pick up on how to wave bye and starting to play peek-a-boo with us. To see him smile Sunday morning as I walked him around the house was wonderful.

This week he saw his cardiac doctor and now a pulmonologist. Right now we are just going to keep up his treatments and meds. Our plan is to keep an eye on him and hope nothing new developes. Not like he doesn't have enough already.

We hope you have enjoyed the pictures. I am posting some we took of Jordan in the CVICU when we celebrated her birthday with AJ. Jordan made a sign for AJ for his birthday. You may see it in the background. We will be celebrating AJ's
birthday next Friday. I can't believe he will be a year old. We have a lot to celebrate.
Thanks you for all your thoughts and prayers. It has meant a lot to us.

Howard

Sunday, February 13, 2005 1:42 PM CST

SURPRISE!!!!! WE ARE HOME!!!!!

AJ was released from the hospital Saturday morning. His potassium levels were up, his CAT scan was unchanged from Monday and his x-ray of the left lung looked better. Mom and I checked out of the Ronald McDonald House and caught a red eye home.

AJ and I are thrilled to be home. I surprised Jordan this morning when I woke her up. She had know idea we were coming back last night.

AJ and I spent the morning catching up on sleep, my dad went home and Jordan and Howard hung out at the park. Things are already back to normal.

Thank you for all of the wonderful support while we were in California again. We are really hoping that we don't have to go back anytime soon.

Love to All,
Melanie

Friday, February 11, 2005 11:57 PM CST

Hello Everyone -

AJ is finally beginning to look like himself again. We moved into a private room on Tuesday, so it has been nice and quiet. However, AJ has not really rested until today. I think Mom and I have started getting him on his schedule. He took a couple of nice naps today and I hope he sleeps tonight. Mom is staying with him so I can get some rest.

The doctors say that the only thing keeping us in the hospital is his low potassium levels. They are giving him extra potassium to bring it up so I hope we will be released sometime Sunday. AJ's lung scan is unchanged from October. He has 78% blood flow going to the right lung and 22% to the left. The left lung is going to give us problems for awhile. We are giving him special nebulizer treatments to help open up the left lung. It seems to help. We are still waiting to hear the results of the CAT scan. If it was bad news, we would have heard by now.

This was the first time I have gotten to a computer in a couple of days. Thanks for all of the messages. We can't wait to get home to celebrate AJ's first birthday!!!!

Much Love,

Mel

Wednesday, February 9, 2005 8:22 PM CST

Hello Everyone,

Another good day for AJ. He tried to get some more rest. Tomorrow/Thursday he will have another CAT scan and his lung scan. CAT I figure is to see what the fluid is doing and the lung scan is to measure the distribution of blood to the left and right lung.

I posted new pictures of AJ and Jordan. These are ones back when he was 2 weeks old.

Mel told me that everything seem to be on schedule for them to return next week.

Jordan has been instructing Gran Dad on how he should cut her fruit. He did not do it the way mommy and daddy does it. She even drew a picture and demonstrated how it should be done.

Thank you everyone for you continued support. It really means a lot to us.

Howard

Tuesday, February 8, 2005 8:05 PM CST

Hello Everyone

Goodnews is that AJ did not have to go in for surgery today. Mel had a hard 24 hours waiting for this to find out Dr. Hanley put a stop to it. As I am told, the thinking that opening AJ to remove fluid will expose him to getting an infection just as much as keeping it and letting it slowly go away on its own. With that happening, AJ went to the 3rd Floor to finish his recovery. Yep out of the ICU. Yeah...

AJ had a good day of rest. Mel noted that he is smiling more and when I got to say hi to him by phone, smiled for my voice. If they stay true to what we have been told, AJ should get released in 5 to 7 days. Hope nothing else pops up with him to delay it. His last test will be his lung scan later this week. Hope that it comed out more equal this time.

As much as we enjoy the doctors and nurses LPCH, we are happy to finally get another step towards AJ and Mel coming home.

Howard

Monday, February 7, 2005 7:43 PM CST

Hello Friends -

First, I want to wish Jordan a Happy Fifith Birthday!!! I spoke with her a couple of times. She was very excited to have her party at Miss Ann's house and to receive a DVD from Grandma. Plus, Grandad is there. She is in heaven.

Now comes the new info about AJ. He had a CTAngio today that revealed a sack of fluid around his pulmonary artery. The doctors say they have to drain it, but are not sure which procedure they are going to use. The options are to do a cath and put in a tube to drain it or to actually open him back up again to get the fluid. I am hoping for the first option. In the mean time, AJ seems to be comfortable. I am not seeing too many smiles yet, but hope to soon. With this new info, it looks like our stay could be extended. Pray that AJ only needs a simple procedure.

Please keep AJ's friends Colin and Gavin in your prayers tonight too. Colin just had his third heart surgery today and Gavin is anxiously waiting to go home after his second surgery.

Much Love,
Mel

New Update: AJ will be having surgery tomorrow(Tuesday). I am not sure of the time yet. The surgeon will go through the chest again, which has not healed yet, and will be easier to get into. They expect the actual procedure to take less than an hour, however it takes an hour to prep and an hour to close. Recovery time for this one is about four to five days. The CT showed that the fluid in this sack is dark so they feel it is blood. Blood pockets like this can lead to infection. They will place more chest tubes in that area to avoid this happening again. Keep you fingers crossed and your prayers with him tomorrow.

Sunday, February 6, 2005 7:47 PM CST

Good Day Everyone

Jordan and I have made it back home. She is excited about turning 5. Friday Mel and I took her out for a Chucky Cheese lunch and gave her presents in the ICU so AJ could see her open them. You see on his face a question to what is worse, teething or recovery? Both at the same time can't be fun.

Spoke with Melanie a few time today. AJ has been taken off the CPAP machine because its not doing what they hope it would. Doctors hoped that it would keep the calasped portion of his lung open. His x-rays show that most is open and that he just has excess fluid. Melanie was able to hold him now. It was for the most part a quite day. They did discover that AJ develope a fluid pocket around his heart. We are told it is not uncommon for this to happen when you have multiple surgeries. To make sure it is nothing else they will continue to do ECO on him to keep and eye on it. Tomorrow/Today he will get his lung scan and CAT scan.

Thank you everyone for your continued support.

Howard

Friday, February 4, 2005 11:46 PM CST

Hello Friends -

AJ had a better day today. He is still on the CPAP, but seems to be tolerating it better. We moved into the back room of the CVICU, which is a tad quieter. Although, today was very busy for the ICU unit. Anyway, the doctors will continue to monitor the lungs and hope they will open up with some respiratory therapy.

Today was a happy and sad day. We celebrated Jordan's birthday early with a fun lunch and presents. Jordan is watching her new movie "Mulan II" as we speak. I am sad because they are heading back to Maryland first thing in the morning. It is always hard to say goodbye, even for a short time. It will be good for both Howard and Jordan to get back into their routines.

We were able to check into the Ronald McDonald House today. I moved in some of my things tonight and will bring the rest tomorrow. My mom will be arriving on Wednesday, so she will have a place to stay. I will sleep there until AJ is moved into a regular room.

Howard will be taking the laptop with him back to Maryland, so I will not have access to a computer all of the time. We will try to update the website daily until AJ is out of the ICU. After that, it may be every couple of days.

Thank you so much for your support through these difficult times.

Love,
Mel

Thursday, February 3, 2005 11:21 PM CST

Hello Friends -

This was not one of AJ's best days. We arrived at the hospital to find AJ on CPAP which is a step down from being on the ventilator. AJ's oxygen levels had been dropping all night and an X-ray showed his upper right lung collapsed. The CPAP pushes a lot of air through the nose so it helps to keep the lung open. The doctors feel that he is still doing well even though he had to go on CPAP.

Tomorrow we expect them to take out his last chest tube, which should take pressure off of the right lung. Hopefully, he will be able to come off the CPAP and back on the nasal cannula.

Jordan had a great day in the playroom. She stayed up there by herself, which gave Howard and I time to be with AJ. Tomorrow, we will celebrate her birthday early.

We are also hoping to move into the Ronald McDonald House tomorrow. It would be great to get in there before Howard and Jordan leave on Saturday.

Thank you for all of the positive messages today. They helped lift our spirits. Please continue to keep AJ in your thoughts and prayers over the next few days.

Love to All,
Mel

Wednesday, February 2, 2005 11:26 PM CST

Hello Everyone -

Today was a huge day for AJ. He had a chest tube and an IV removed and he is off the ventilator. We are so happy to see him without a breathing tube. However, he is still out of it. He is awake, but his eyes are glazed over. The sedation medication still seems to be lingering in his system. The doctors say it could be another couple of days before it wears off. I hope we start to see the real AJ soon.

Now that AJ is awake more, we are at the hospital most of the day. Jordan is enjoying playing in the playroom and doing arts and crafts. She has made decorations for AJ's bed and for AJ's friend Colin.

Thank you for all of the prayers and kind words. We love reading our messages every evening. Jordan loves her messages too.

Love,

Mel

Tuesday, February 1, 2005 8:29 PM CST

Hello Friends -

AJ had another good day. The doctors have turned off more of his medicine and feel he should come off the ventilator within 48 to 72 hours. We are pleased with the progress he has made. The nurse said he even smiled at a picture of Jordan today.

Howard and Jordan will be coming home on Saturday and I hope to be moving into the Ronald McDonald House around the same time. It will be closer to the hospital and cheaper.

We have enjoyed seeing old friends while we have been here. Gavin just had surgery yesterday and Colin has been in the hospital since he was born(5 months). Please keep them in your prayers today.

We have posted some new pictures from the last few days. We have included a couple of AJ in the ICU. Enjoy!!

Love,
Mel

Monday, January 31, 2005 10:49 PM CST

Hello Friends -

AJ had a good day. His heart pressures have come down to normal levels and they discontinued one of his heart medications today. Yeah!!! Howard and I were thrilled about the heart pressures. The doctors started feeding him this morning and they also lowered his oxygen support. We are taking his recovery one day at a time. The doctors are taking things slow and are not taking any chances. He was awake for awhile today and looking around. AJ is moving around more when we are visiting him and he even peeked at Jordan when she was playing peek-a-boo. AJ is also getting more upset when he hears us and they have to sedate him before he gets too excited. We would love to spend more time with him, but right now he needs his rest.

Today, Howard, Jordan and I went to the Jelly Belly Factory. We ate jelly bean shaped hamburgers for lunch and went on a tour of the factory. Some of the machines waved at us and we got to see how they make those yummy little treats. Jordan thought it was so cool.

The weather has been great. It was sixty degrees here today.

Jordan loves the messages she is getting. She can't wait to get home to play with all of her friends.

Love,
Mel and Howard

Sunday, January 30, 2005 11:57 PM CST

Hello Friends -

AJ is showing signs of improvement everyday. The doctors are still watching the pressures in his heart, which are running high, but feel they are just chasing a number. AJ began waking up a little bit today. He would open his eyes and move around in response to our voices. He even tried turning his head toward Jordan's voice.

Howard, Jordan and I enjoyed a beautiful day in San Fransisco. We went to Fisherman's Wharf and Alcatraz. We went on the carousel and saw the sea lions on Pier 39 and Jordan was not happy when Howard stood in a cell to have his picture taken. It was a fun day.

Thanks for the continued thoughts and prayers.

Love,
Mel

Sunday, January 30, 2005 0:07 AM CST

Hello Everyone

Another day in the CVICU for AJ. He is more stable today as the doctors and nurses have begun to figure out AJ's normal levels. Today it was a lot of rest under sedation and a lot of regular pulmonary treatments. Still getting a lot of mucus from his lungs. AJ is having a harder time with recovery than the last time. With his left lung closed off for so long, it needs to get used to normal blood flow again.

Today we ventured a little further and took Jordan to Muir Woods just north of San Fransisco. We went to see the tall red wood trees. Just a nice peaceful walk through the woods. Jordan remembered them from June and wanted to see them again.

Overall, today was a better day. We hope to see continued improvement over the next few days. Thanks for all of the prayers.

Love,
Mel and Howard

Saturday, January 29, 2005 0:52 AM CST

Hello Friends -

AJ is doing fine. He has had his ups and downs today. His pressures have gone up a couple of times and he has a lot of junk in his lungs. The doctors are doing some fine tuning with his medicines to keep him stable and have added a few nebulizer treatments to help open up the lungs and keep them open. Dr. Hanley said that AJ had a long surgery and this difficult recovery is to be expected. Dr. Hanley also mentioned that they might do a bronchial scope in a few days to suction the junk out of his lungs. Since the left lung has been collapsed for so lung there is a lot of
old stuff being suctioned out.

They are keeping AJ heavily sedated so he stays calm and his pressures stay low. However, he is not sedated enough if he is able to scratch his nose and try and pull the wet cloth off his head. It's good to see him move a little bit.

We spent the day visiting AJ, playing at the children's museum, doing laundry and napping. Jordan sits nicely at AJ's bedside watching TV. She does not like looking at all of the tubes going into him. The museum was crowded, but fun. They have a play pizza parlor, which Jordan loves. She could have played there all day. We took Jordan to her first laundromat. She was fascinated with watching the clothes dry. Who needs TV when you can watch clothes spinning around?

Depending on how AJ is doing tomorrow, we are thinking about going into San Fransisco.

Thank you for the continued prayers. AJ can use all of the prayers he can get during this challenging recovery period.

We added new pictures taken over the last couple of days. Enjoy!!!

Love to All,
Mel and Howard

Thursday, January 27, 2005 10:54 PM CST

Hello Everyone -

With all of the hits we have on our site, I know everyone was anxiously waiting for info about AJ's surgery. It was a long day today. AJ was playing this morning and full of energy before surgery. I was glad our surgeon saw him awake and happy. They took him about 7:30 A.M. Dr. Hanley originally thought surgery would be complete around 1:00 P.M. However, he did a little more work on AJ's arteries and the surgery finally ended around 5:30 P.M.

The surgery consisted of narrowing the main pulmonary arteries, replacing the valve with a smaller one and opening up four arteries on the left side. AJ was stable throughout the entire procedure.

He looked good when we saw him tonight. AJ was a little on the blue side, but that is to be expected after being on the bypass machine for so long. Jordan had the opportunity to see him and even made him a picture to hang on his crib.

The plan now is to keep him calm. He will be given pain and sedative medication for the next couple of days to keep him quiet. He needs to heal.

Our plan is to sleep. We have been up in the early morning hours for the past three mornings and need to rest. We plan to visit AJ several times a day and take Jordan to the Children's Museum.

Thank you for the wonderful thoughts and prayers.

Love to All,
Mel and Howard

Wednesday, January 26, 2005 11:21 PM CST

Another pre-op day for AJ. We get to see familiar faces and have to answer questions about why we are back.

We found out the plan for AJ. The surgeon will make things smaller. The lower veins can not handle the blood flow and this is why the artery became enlarged. AJ will get a smaller valve and he will make his arteries smaller. AJ will be put on the bypass machine so the heart will slow down for the valve to be replaced. With smaller arteries, this will allow the viens in the lower part of his lungs more capable of handling the blood flow and make the distribution of blood more equal. It is expected this procedure will take 6 to 8 hours tomorrow.

His surgery is set for 7:30 am. For us, its another early morning and late night. This is the first time AJ did not get admitted early. He is with us till we drop him off in the morning. His spirts are high. It helps to have a sister who can be so entertaining.

At the hospital, we not only had a chance to see nurses and doctors, but families we have met in prior visits. It is nice to see people we already know. We feel bad that they have not had the chance to go home. Mel walked back to see a friend she made during our last visit and saw that the CVICU was packed. I hope they have room for us tomorrow.

Mel and I continue to have high hopes that he continues to be the strong little man he has been. We will update our pictures more regularly soon. We've been able to document our visit with more pictures.

Thank you for all of the wonderful prayers.

Love,
Howard and Mel

Tuesday, January 25, 2005 10:35 PM CST

Hello Friends -

We have arrived in California safe and sound. Howard and I feel like we are in a town in Maryland. We have been here so much it is beginning to feel like home. We even ran into a family, that was in the hospital the last time, at our hotel. Their son is having surgery this week too. It's so nice to see familiar faces.

We had a good flight. Jordan loved watching TV the entire time and AJ cried most of the time. He is teething right now. We were able to take a nap this afternoon to catch up on some much needed sleep and hope to get a good night sleep tonight.

We are staying at the Stanford Motor Inn tonight and are suppose to move to another hotel tomorrow. We have heard that the other hotel is not very great, so we are going to try and stay here. The Ronald McDonald House had a flood over the weekend, so we were unable to get into there.

Tomorrow, AJ will have his pre-op tests done and surgery is scheduled for Thursday.

We will update our website daily for the next couple of weeks. We will also take pictures of him recovering and post those on the website.

Love to All,
Melanie

P.S. We were walking around outside without coats on today. I can always find the silver lining.

Jordan's note to her friends -

Dear Friends,

I love you so much. I will come back home when my Dad comes home. My Grandma will come back to California and help Mommy to help AJ get home.

See you soon,
Jordan

Wednesday, January 19, 2005 9:50 PM CST

Hello Friends -

Our plans have finally been set. The entire family will leave for California on Tuesday, January 25th. AJ will have surgery on Thursday, January 27th. We hope to get into the Ronald McDonald House this time. We should find out about that on Friday.

Jordan is excited about going with us this time. She really missed Howard, AJ and I while we were gone in October. She will stay for the first couple of weeks and return with Howard on February 5th. My Mom will join me in California around that same time and help me bring AJ home. Coming home by myself the last time was a little challenging.

As always, we will be taking our computer and updating our website daily. Please check the website often and feel free to leave messages. At the end of the day we look forward to reading the guestbook. It's our way of feeling connected with our friends and family.

Please keep AJ in your thoughts and prayers over the next couple of weeks as he goes into surgery.

Don't forget to check out our recent photos of the children.

Love to All,
Melanie

Monday, January 17, 2005 9:40 PM CST

Hello Friends -

We are still waiting for a date. It has been narrowed down to the week of the 24th. Yes, sometime next week. I know we can narrow it down to Wednesday through Friday because that is when our surgeon works at Lucile Packard Childrens Hospital.

In the mean time, we have updated our photos again. I am getting better with the digital camera. I figured out how to resize a photo so it is not super large.

Jordan has a new favorite pass time. It is taking photos with the digital camera. She likes the fact that in an instant she gets to see the picture.

AJ continues to get stronger. We still have a lot to work on, but what he has been able to do in his current condition has pleased Mel and I.

Thank you for your support and take a look at the new pictures.

Howard

Thursday, January 13, 2005 9:02 PM CST

Another one of our fun and exciting days with AJ and his doctors.

AJ still has problems with his lungs... No surprise with that. We thought he was going to be admitted again, but thankfully he wasn't. His condition has not changed and its always fun to see everyone react to him when they see him for the first time. AJ had another CAT scan and saw another pulmonary doctor. All have the same thing to say. He needs to have this fixed soon.

We did find out that it will be, California here we come.
Yep, back to Palo Alto. Just wish we knew exactly when. We are told that its being worked on to fit him in on the surgery schedule. Things will have to happen quick when we do get final word.

Thank you everyone for your continued support and prayers.


Howard

Tuesday, January 11, 2005 7:50 PM CST

Hello Everyone

We have nothing new about what is going to happen yet with AJ. My best guess is Thurday when we get to see his cardiac doctor.

AJ continues to seem fine. I have updated his pictures since the last ones are 6 months old. Trying to get use to a digital camera. They came out large and I am trying to figure out how to get them smaller.

Enjoy the pictures and hope we find something out soon. This waiting stuff is not fun.

Take care

Howard

Saturday, January 8, 2005 11:07 AM CST

Hello Friends -

AJ and I are home. We got home on Wednesday afternoon and then had to learn how to give AJ IV medication through hic PICC line. It is much easier than we thought.

AJ is doing well considering he has a collapsed lung. He is getting some air in the left lung, but they need to do surgery before it gets worse. We hope to hear when and where surgery will take place on Monday.

In the mean time, AJ is back to his normal self. He is playing, laughing and he even learned how to shake his head no. Jordan taught him that. We cannot believe how strong this little man is.

Thank you so much for the continued thoughts and prayers for AJ and our family. We are so grateful to have all of you in our lives.

Love to All,
Melanie and Family

Wednesday, January 5, 2005 7:51 AM CST

Good Day

I am hoping that everything goes well for AJ and Melanie so they get to come home today. AJ is stable. He doesn't require oxygen and never did, plus he acts as happy as can be. It was real close yesterday for them to come home before another group of doctors decided they wanted to try one last thing.

The Pulmonary doctors wanted to try and perform a bronchial scope of his lung. This would be an attempt to remove excess mucus. They decided against it and Mel and AJ spent another night in the hospital. In the end they decided to start him on a steroid to help him with his lungs. Same treat Jordan gets.

Mel tells me the doctors seem to be leaning towards AJ having another surgery. Right now they are just trying to decide what to do once they are inside. Our doctors want to save his lung; but, then the question is how. How do you fix this so AJ wont have the same problem again in 8 weeks?

We are just waiting. Hoping they get to come home for a few days before he has another surgery. Then, we don't even know where that might be. We are leaning towards the east coast. Washington Childrens has a doctor of equal caliber to the one we had at Stanford. Mel and I have been happy with these doctors and how they have kept us informed and educated in how he should be treated now and for the long haul. (For those wondering)This doctor did not arrive until after AJ had his first surgery at Stanford.

Right now we continue to wait and see what everyone has to say.

Thanks to everyone for your support.

Howard

Tuesday, January 4, 2005 7:43 AM CST

Good Day

AJ and I had a relaxing New Year. We both slept in the New Year. The little man was good for me all weekend. If you looked at him, he does not act like a person with a collapsed lung. Just smiling and playing.

Jordan and Melanie on the other hand sound like they had a grand old time together. Little Miss Jordan was just to excited to fall asleep. She stayed up till Midnight and brought in the New Year. They saw fireworks from the back deck. Think some local country club was doing the fireworks.

Monday AJ had his Cardiac Cath, plus they put in a PIC Line, (which is a long term IV) so that we can administer his meds at home. We did not receive any more information than they have told us already. This was more of a diagnostic procedure with hope the could do some corrective work. The Doctor at the time felt that with his underlining issues, anything else would not be a benefit to AJ. Meaning to try to expand is smaller arteries, with his liver condition and effects it has on his artery development may bring about more demage than good.

So, now we wait, like we have been, until everyone gets a chance to weigh in. We have been told that the diagnosis is the easy part. How to fix the problem is tricky. Tricky because they have possible approaches just not one that does not come with risk. Just about everyone one tells us, "your son is in a High Risk category". Just after 10 months I hope they would realized, we know that. We have to see what the doctors come up with as our best options or first approach.

Seems like an answer might not come for a couple of days.

Thank you

Howard

Thursday, December 30, 2004 10:10 PM CST

Hello Everyone -

If you are just checking in with us, AJ is currently at Children's Hospital in Washington D.C. We took AJ to the emergency room for a possible ear infection and was diagnosed with pneumonia in the left lung. After further testing, it was discovered that AJ has a bulge in the left pulmonary artery. This bulge is pushing up against the left bronchial tube and blocking the air flow to that lung. This is how he got pneumonia. He also has a small amount of blood going to that lung aswell. They have started AJ on antibiotics and he is doing much better after some much needed sleep. He has not needed oxygen support through this issue, which is amazing.

AJ is scheduled to have a Cardiac Cath on Monday to explore his arteries and lungs. They will use this as a map for surgery, which will probably be next week aswell. The big question at this time is where will the surgery take place. We believe he will have it done at Children's, but the surgeon here will give our surgeon in California the opportunity to do it first. They don't want to step on anyone's toes. The surgeon here is ranked in the top 5 surgeons in the country, just like our surgeon. Howard and I are hoping it can be done here so we don't have to travel. We should know the answer to this question Monday or Tuesday.

I hope everyone had a wonderful Christmas. Ours was filled with lots of love and laughs. Our New Year will be filled with the joy of AJ's recovery. Please keep AJ in your thoughts and prayers during this challenging time.

Love to All,
Melanie

Wednesday, December 29, 2004 8:21 PM CST

Happy New Year Everyone

Soon to be New Year. This New Year will be the first time in 15 years Mel and I will not be together. Hope everyone has been having a good holiday season. Christmas was so much fun.

Some of you know Melanie and I took AJ into the emergency room to get checked out for a cold and possible ear infection. Guess you would figure by now, we know nothing is always that simple when it comes to AJ. He is back in the hospital. Currently, he is at Children's Hosiptal in Washington.

We have found out that AJ is having problems with his left lung due to a heart condition. It has been found that his heart is swollen and pressing against his left bronchial tube. This is not allowing air, or much air, to his left lung. His blood flow to the left lung is at best 5%.
The current plan is to have a CATH done to get information from inside his body. They may try to expand his pulmonary artery with a balloon type instrument to allow more flow and possibly to put in a stint to allow the airway to stay open. They are looking at possible fixes without having to open him up. He has an infection in his lung and they would like to allow him time to get over it.

As you can tell we had a busy couple of days. We thought it was going to be a quite relaxing holiday.

We will keep updating more regularly now to keep everyone informed to what is going on.

Have a Wonderful New Year.

Friday, December 10, 2004 9:39 PM CST

Hello Friends -

I hope everyone is getting ready for the holidays. Our decorations are up and the shopping is getting done slowly. It's hard to shop with little ones.

AJ is doing great!!!! He is gaining weight(up to 14 pounds 6 ounces) and getting stronger everyday. We work with the best physical therapist every week. AJ is starting to tolerate tummy time. All of his doctors think he looks wonderful. We are basically in a watch and wait mode now.

Thank you for all of the wonderful messages and prayers. We want to wish everyone a Happy Holiday and New Year.

Love to All,
Mel, Howard, Jordan and AJ

Tuesday, November 16, 2004 10:30 PM CST

Hello Friends -

We are finally home!!!!!!!! AJ and I arrived on the east coast Saturday evening. Jordan was thrilled to see her Mommy and I was even more excited to see her. It was an emotional reunion at the airport. AJ and I are getting used to being home. AJ looks great. He is smiling all the time and is quite the chatter box. He really missed his Daddy, sister and Grandma.

Over the next few weeks we will be following up with AJ's doctors and then we hope to have a little down time. We are looking forward to the holidays and Howard's birthday.

We will continue to update the website every couple of weeks to keep you informed of his progress. I just received some new digital pictures that I hope to get posted soon. Sorry for the delay.

Thank you for all of the wonderful prayers and kind words sent our way. They helped to keep up our spirits and we were able to share them with other families in the hospital. Our family is so grateful to have the best family and friends anyone could ask for. You keep us strong!!!!


Have a wonderful Thanksgiving!!!!

Love,

The Koller's

Monday, November 8, 2004 7:23 PM CST

Hello Everyone

Mel and AJ have made it through another week. AJ is healing just fine and continues to be weened down on his treatments. AJ has had a tough time with his feeds as the doctors continue to find the right amount of calories and volume he can handle. It was thought this would be a good time to see what his body can handle since they can watch certain body functions through his blood test. Now after many, lets say (refunds) at 26 calories, they are just leaving him alone and back on his normal feeds.

Other than dealing with his feeds, Mel seems to be getting by. Finished reading a book, visits with other parents and nurses we have met in the ICU when she can get out of the room. Mel has told me, as hard as it is for us we see those who have it just as bad and have harder decisions to make. Please, keep in your prayers the the child we know who will need a heart and lung transplant and the parents who recently lost there child after 2 years. (her whole life was spent in some kind of treatment facility. She never made it home.)

Mel and I appreciate the prayers and support everyone has shown us, the doctors and nurses who have treated and taken care of AJ, and ofcourse AJ with his strength to endor everything he has been put through.

Mel is looking forward to coming home Saturday.

Thank you

Howard

Sunday, October 31, 2004 9:08 PM CST

Hello Everyone

Glad to be home with Jordan. We spent our day getting ready to go out to trick or treat. Jordan looked wonderful as Wonder Women and was a great help in carving our pumpkins.

AJ has been healing very well. Before I left, the last few day we got him to smile more and laugh. Melanie and I told the doctors... does this look like a sick child. He has to finish 2 more weeks of his antibotic treatment and then they will be home.

We been told that his lungs are not getting the kind of blood distribution as they like. Something we had been told could happen since he had a lot of work done to help expand his arteries. This will be followed and hope with his heart working properly that it could work itself out.

Thanks to everyone for your support.

Howard

Friday, October 29, 2004 1:04 AM CDT

Hello Friends -

AJ loves being in his own room. It's soooooo quiet!!! Well the doctors final decision for AJ is that he will need IV antibiotics for two more weeks starting tomorrow. After many discusions, we decided it was best for AJ to finish his recovery in California. We want to make sure there is no interuption in his medications and care.

Howard will be returning home on Saturday so he can go back to work and be with Jordan. It will be good for one of us to be home with her. When AJ is released from the hospital, my goal is to go straight to the airport and fly home.

Howard will be taking the computer home with him, so I will not be updating the web page from California. Howard will update it every couple of days.

Howard and I are so thankful for the love and support we have from our friends and family. We could not have gotten through the last eight months without all of you. We have also met many wonderful families in the hospital. Howard and I feel very fortunate that we can see the light at the end of the tunnel. Some of these families have been in the hospital for weeks and are just at the beginning of that same tunnel. AJ's new friend Colin was born with only half a heart and will be having his second heart surgery tomorrow. Please keep him in your thoughts and prayers.

Love,

Mel and Howard

Thursday, October 28, 2004 2:18 AM CDT

Hello Everyone -

We are finally out of the ICU!!! They moved him at 11:30 P.M. this evening. AJ will have to stay in the hospital here for another week and then he will be moved to a hospital in are area. We think he will go to Inova Fairfax. AJ needs to be on antibiotics for three more weeks and they need to be given through his IV at a hospital. Howard will return home this Saturday, so he will get to spend Halloween with Jordan. I am looking forward to returning to the east coast, so I can see Jordan too.

Love to Everyone,
Mel

Wednesday, October 27, 2004 10:01 AM CDT

Good Day

Yesterday was another day of waiting around for Melanie and I. AJ finally had the CT scan to see if they could find pockets of fluid inside him that may be causing his white blood cell count to be so high. They did find some but the good news is, this morning his white cell count was down from 30 to 19. Normal is 17.

We are hoping AJ is finally making the final steps to us coming home.

Keep Praying!!!!

Howard and Mel

Monday, October 25, 2004 11:17 PM CDT

Hello Again -

AJ is doing well this evening after we figured out that he was addicted to morphine. He has been going through withdrawal for the past several days. The doctors have now put him on methadone to help him through this difficult time. After he received the first dose this afternoon, he was back to his cheerful and playful self.

We are still waiting for his white blood cell count to come down. The cat scan he was supposed to have today to rule out infection, was postponed until tomorrow. We were told that your white blood cell count can go up due to stress. We wonder if it has been high due to the stress of him going through withdrawal. I guess we will have to wait and see.

Since AJ may need to stay in the hospital longer than anticipated, Howard and I are making plans for the next couple of weeks. Howard will be home this weekend so he can go back to work and I will stay with AJ. Hopefully he will not have to stay too much longer.

Thanks for the continued thoughts and prayers.

Love,
Mel and Howard

Monday, October 25, 2004 10:21 AM CDT

Hello Everyone -

Sorry I did not post a message last night. AJ was up late and we didn't want to leave the hospital until he was asleep. AJ continues to improve in all areas except for his white blood cell count. If we could get this issue resolved, we would be on a plane back home. However, at this point they have not been able to find the source of the infection. They will be doing a cat scan today to see if they can find anything. If that comes back negative, then they will do a round of antibiotics. The problem with that is, we could be here for another week or two. Keep your fingers crossed that things start moving in the right direction.

Love,
Mel and Howard

Saturday, October 23, 2004 8:35 PM CDT

Hello Friends -

AJ had a good day. His numbers came down a little bit, but we will see what happens with the numbers tomorrow. We were thrilled to see AJ smile and laugh for the first time in 11 days. We hope he is on the road to recovery.

We are experiencing some rain and colder weather here. We hope it passes soon.

Love,

Mel and Howard

Saturday, October 23, 2004 0:19 AM CDT

Hello Everyone -

AJ is still hanging out in the ICU. They love him there. The nurses and doctors are always coming by to see him. His surgeon said he was doing very well. We just need to get over this last hurdle. They have changed his medications around and we hope to see an improvement in his numbers tomorrow or the next day. While we wait, Howard is begining to study for the CPA exam again and I am working on AJ's quilt. We do try to get out of the hospital for dinner each night.

We love hearing from everyone. The kind words and prayers help us get through this challenging time.

Thanks,

Mel and Howard

Friday, October 22, 2004 0:33 AM CDT

Hello Friends -

AJ is still in the ICU, but is doing well. His white blood cell count is coming down, so I guess the new medications are working against the infection. The doctors will be pulling out AJ's central line tomorrow and putting in a PICC line. They feel the PICC line will be better for drawing blood and giving medications. We expect AJ will be in the ICU for another day or two.

Thanks for the continued thoughts and prayers.

Mel and Howard

Thursday, October 21, 2004 0:25 AM CDT

Hello Everyone -

AJ is so happy with his nurses and doctors in the ICU that he doesn't want to leave. AJ seems to have an infection so they are keeping him in the ICU to treat it with many differen