Everybody Loves Austin

Thursday, January 22, 2009

MRI results

Just wanted to update that Austin had an MRI of the brain on January 13. It showed no changes, which is good news. He does not have to have another MRI until July. We obtained a copy of the MRI and sent it on to Nevus Outreach, through a new program they are now able to have MRI's read by the pediatric radiologist at UC-San Francisco who is the worldwide expert in reading and performing MRI's to detect NCM. The best part is they have a grant to pay for this so it is at no cost to us. We are very happy to have this opportunity. Austin also saw his neurologist, Dr. Keating on the 14th. Of course, after praising her so effusively in my last post she is now leaving Children's Memorial for Minnesota! So we will have to figure out what to do next on that front. Her opinion on Austin's development is that he is catching up quickly on gross motor skills and is not behind at all in cognitive or fine motor skills. In fact she thought his fine motor skills (using his fingers) were excellent. At almost 17 months old Austin has taken a few steps and is standing alone briefly. He walks holding onto furniture and can climb the stairs all the way to the top. He has been crawling on all fours for about a month and is very fast! He is not saying many words yet, though has a few animal sounds. I have asked for a speech evaluation and have been told that it is being arranged. We are so happy with all of his progress!

Monday, December 15, 2008

Thanksgiving

True, the actual holiday of Thanksgiving was last month and I am very late with this post. But I did want to take a moment to take stock of the many blessings of the past year. One year ago I was not sure if we were going to get the chance to celebrate another holiday season with Austin. Since then many positive things have happened for Austin. He had seizures for a few months that were very concerning, but soon dissipated. One of our great blessings has been Austin's neurologist, Dr. Keating at Children's Memorial. She and her nurse Emily have been so helpful and approachable. She is really unlike any other doctor we have ever known and we are so lucky to have her as a part of Austin's team. We were fortunate that a Nevus Outreach conference was held this year and we were able to attend. I thank God that we are living in the age of the internet and have been able to connect with other people with Austin's condition through Nevus Outreach. I have thought many times how much more difficult this would have been years ago, and my heart breaks for parents who were faced with a rare diagnosis in the pre-internet age. Austin is catching up in motor development. He is now crawling and pulling up to stand on his own. His cognitive and fine motor skills are age appropriate. I can't begin to describe how wonderful this is to see.

I am so thankful for our many wonderful friends and family who have supported us in so many ways this past year. I am thankful for the opportunity to celebrate each day and realize that each one is precious. I always thought I was living this way, but I found out last year that I wasn't. I spent so much time worrying about things that I now realize are not important. It has given me perspective I never had before.

The other morning, Aidan and I went into Austin's room to get him up and dressed. He was standing up in the crib and babbling to us in such a way that I am sure he thought he was chatting with us. I told Aidan, it won't be long before he is actually talking and we will be able to understand. Aidan said, "Mom, I don't really care if he talks or not. I am just so happy that he is here with us."

Every night before I go to bed I quietly sneak into Austin's room and listen for his breathing. As soon as I hear it, a huge wave of relief comes over me and I thank God for one more day.

Wednesday, September 24, 2008

We raised $2177 for Nevus Outreach!!

Thank you, thank you, THANK YOU to all of you for your generosity! We truly believe that every dollar we raise brings us closer to a cure for neurocutaneous melanocytosis. There are scientists working on it right now with mice who have NCM (I know it sounds bizarre but it is really happening!) and human testing is scheduled to begin in 2009. We are ever hopeful!

Tuesday, August 26, 2008

Austin is one year old!

Austin turned one year old on August 24! We are thrilled to report that he had a fun and love-filled birthday. We celebrated with 77 of our friends and family members in our backyard and had a wonderful time. Austin got to try his first piece of cake and he loved it, but mostly he enjoyed spending time with all of his favorite people. We spent 11 months thinking about and planning for this party. When I said that we promised him a big party at his bedside in the hospital last September I was not trying to be dramatic. At that time, we were not given a lot of reason to hope that Austin would be here with us to see his first birthday. So when we made that promise it was a way for us to hold on to something positive in the future. But in my heart I always knew we'd have this party and celebrate this wonderful day with all of the people that supported us and helped us through that horrible time. And here he is, Mr. One Year Old, doing so great and right now making his way across the dining room floor to get into his brothers' toys. (So far he is rolling across the floor, not quite crawling yet, but getting around just the same!) Thank you from the bottom of our hearts to all who came to the party or made a donation and marked this occasion with us. I guess to some a baby's first birthday party is not that big of a deal but to us this was one of the most important days of our lives. Hope to see you all at his 2nd birthday party next year!

Wednesday, July 23, 2008

How to donate to Nevus Outreach (and help find a cure for NCM)

Austin is turning 1 year old on August 24! For this occasion, we are trying to raise as much money as possible to find a cure for neurocutaneous melanocytosis. Although this is a very rare condition, there is an organization that is committed to providing support for people with NCM and large nevi, promoting awareness and finding a cure. Nevus Outreach, Inc. has been a great source of support and information to us in the past months and we are committed to this cause. If you would like to learn more, please visit the website at http://www.nevus.org/. If you would like to make a donation, go to http://www.nevus.org/ and click "donate" in the upper right hand corner. Please indicate that your donation is in honor of Austin's birthday so Nevus Outreach can total up the amount we have raised as a group. If you feel more comfortable donating by check, please use the donation form on the back of the Nevus Outreach brochure. (If you need one please let me know). Additionally, after his birthday everyone who makes a donation will be able to access a special "after party" area of the nevus.org website that will contain pictures, video and other content from the birthday party, plus update you on the total amount we have raised as a group.

Friday, July 18, 2008

Pictures from the conference

Austin thought the hotel was pretty awesome

Aidan & Liam dancing at the anniversary party

Family picture

Aidan & Austin at dinner

Thursday, July 17, 2008

Austin's MRI

Just to update everyone, Austin had an MRI on Tuesday July 15 and we went to see Dr. Tomita, his neurosurgeon, at Children's Memorial yesterday to get the results. The news is good. There are no changes since February's MRI. Also a cyst in the brain stem area that we have been watching is getting smaller. The only better news would have been "all the spots are gone" so we are pretty happy!

What is neurocutaneous melanocytosis (NCM)?

NCM is a condition that occurs when pigment cells like the birthmarks seen on the outside of Austin's skin are also seen in the central nervous system (brain and spinal cord). These cells can cause symptoms such as hydrocephalus (fluid on the brain) and seizures, and have the potential to become malignant (cancerous). It is an extremely rare condition. For more information please visit the Nevus Outreach link below. Nevus Outreach is the association for people with large nevi and related disorders (such as NCM) and are our most important resource for providing support and funding medical research for this condition.

Austin's history-CarePage entries

September 25, 2007 at 11:46 AM CDT
Hello everyone, I started this care page to let people know what is going on with Austin so we can just update everyone at once. After noticing that his head was swollen we took Austin to his pediatrician on Monday morning. He was then transported by ambulance to Central DuPage Hospital where he is now staying in the Pediatric ICU. On Monday he had an MRI and CT scan which showed fluid build up on his brain. He had surgery that afternoon to place a shunt which will drain the fluid. The condition is called hydrocephalus. The neurologist believes it is related to the large birthmarks that he has on his back and legs. It is called neurocutaneous melanosis and it means that the lesions are growing inside of his brain as well as on his skin and preventing the cerebro spinal fluid from draining. The good news is that since babies' skulls are not yet fused together there was room for the fluid to escape out of the skull and for the most part it was not pressing on his brain. Austin's surgery went well. He now has a shunt in his head connected to a tube that goes into his abdomen to drain it. Right now he is resting and beginning to be able to eat. He will have to stay in the hospital for 4-5 more days. He had a CT scan this morning that showed a small hemorrhage that needs to be watched during that time as it can impact the shunt. The staff at CDH is wonderful. The nurses are very caring. The doctors are all pediatric specialists who also practice at Childrens' Memorial. We have a neurologist and a neurosurgeon, as well as a pediatric dermatologist, that we will be following up with in the future. I will try to update this page regularly to keep everyone informed. Please keep us in your prayers.

2 September 26, 2007 at 08:12 AM CDT
Austin is resting in his bed today and is awake and eating. He had a CT scan yesterday that caused some concern about the hemorrhage in his brain (in the ventricle) but on a repeat scan they saw that it is clotting so they think it will stop hemorrhaging. The concern was because his blood level dropped significantly yesterday and they had to find out if the hemorrhage was the cause. He had a blood transfusion last night and this morning the doctor told us that his hemoglobin level is up to where it should be now. Austin is drinking pumped breastmilk from a bottle for now as they need to monitor exactly how much he is getting. Also right now we are not able to hold him (which is horrible and very hard for me) because he has to lay flat in the bed to control the amount of drainage from his shunt. Dr. Chenelle our neurosurgeon said we may be able to hold him today so I am hopeful. Austin has a mobile with bluebirds on it that he loves to look at. When we came here his eyes were not focusing well, the irises were kind of sinking under his eye socket and you could see mostly white when he opened his eyes, that was from the fluid in his brain. But now they look great. We are waiting to hear from a specialist at Children's to confirm a diagnosis and then the doctors are going to sit down with us to determine what the next step will be treatment wise. On another note Brian was admitted to Delnor hospital last night after having severe back pain. He went home to get some things and his back went out. He was taken there by ambulance and then ended up being admitted. I am really hoping he can be discharged today. He is obviously very upset at not being here with Austin. Aidan & Liam were both there when the ambulance came. Liam was pretty upset last night but Aidan seemed to be handling things as well as can be expected. They were both here yesterday to visit Austin and I. Thank you so much for your prayers.

3 September 27, 2007 at 03:07 PM CDT
Brian is out of the hospital. He walked out against medical advice because the orthopedic doctor was taking too long to see him and he wanted to get here. He is still in some pain but is seeing a doctor here at CDH today. We had a very busy day yesterday. First, Austin began having some seizures. They involved increased heart rate, decreased oxygen and some eye movements, but the neurosurgeon feels that they are related to the rapid change in size of his brain and a normal thing that can occur after surgery. So he had an EEG yesterday to confirm that seizures were occurring and then they put him on anti-seizure medication. The medication makes him very sleepy and they also would not let him eat (take a bottle or anything) for several hours. That was awful because he would wake up crying because he was hungry and we couldn't feed him. The seizures seemed to go away after several hours of medication so now they are letting him eat. He had another EEG today to determine whether the seizures have been eliminated or not and if they have he will decrease the level of medication. Today we are getting to hold him and that is really nice. He looks wonderful, his head is almost back to normal size and the swelling is almost totally gone. Now that the shunt is in, the hydrocephalus (fluid in the brain) is controlled,the next step is to definitively determine the cause of the hydrocephalus. Our neurologist feels that the diagnosis of neurocutaneous melanosis is the only one possible, due to the symptoms of acute hydrocephalus (occurring over a few days rather than over months or years), a cyst at the base of his brain in addition to the birthmarks. Austin was born with several quite large, dark birthmarks which are called congenital nevi. When he was born he was evaluated by a dermatologist and the concern was that the nevi had an increased chance of becoming skin cancer at some point in the future, but in no way did we think that they were also growing inside his body on the surface of his brain. That is what neurocutaneous melanosis means. The concern is that the lesions will continue to grow in the future. The neurologist feels that all of these things together add up to this diagnosis. However, this is an extremely rare condition and he has never seen a case of it. There is a specialist at Childrens Memorial who only sees children with masses or lesions of the brain, and she has seen cases of this condition. She agrees that this diagnosis is correct, but they will have to have some concurring evidence by MRI or another method. So the plan is that when Austin recovers from the surgery and is stabilized he will be transferred to Childrens under her care. At this time the doctors think we will be here at CDH until at least Saturday. From what they have told us this diagnosis is not good news and it is an extremely serious condition. We are trying to take things one day at a time and trying not to spend time worrying about what the future holds. In any case, it is sad news and we are doing our best to take it all in. We would appreciate continued prayers. Thank you so much everyone for all of your support.

4 September 28, 2007 at 01:15 PM CDT
Hard to believe it is already Friday and we have been here 5 days now. Although in some ways it seems like I've never been anywhere else and regular life just stopped. It seems almost like there is another me somewhere living my life because it is all so unreal. Today Aidan asked me when things were going to get back to normal again and I told him I honestly don't know. Both boys were here yesterday and today and got to play in the playroom, which they loved. They have a lot of toys and tropical fish so they thought that was the greatest. The news right now is that Austin is doing better in his recovery from surgery. He had a fever yesterday but it seems to be gone now, and I am going to get to try to nurse him again in a few hours. I haven't been able to since Monday so I am really happy to be able to have that cuddle time with him again. Also the pathologist analyzed the cerebrospinal fluid that was drained during his surgery and it does not appear to have malignant cells in it, so that is good. The oncologist here at CDH feels that he should have a biopsy of his skin lesions as well. The treatment from here will change quite a bit if he has malignant cells (melanoma) in the lesions as that would likely mean that the lesions in his brain are malignant as well. If they are not malignant there is still a good chance that they will change in the future, but for now it would obviously be a good thing. As I mentioned yesterday, this condition is very serious. We are waiting to see our neurosurgeon tomorrow as he will be the one to determine when we transfer to Childrens. As of now it seems like I will be going there with Austin to stay and Brian will stay home with the other kids (with help from grandmas & grandpas) since he really does need to get back to work at some point. We have a very strong family support system and feel very lucky for that. We all appreciate the prayers. We also appreciate the supportive words. It has made it easier to go through this.

5 September 29, 2007 at 10:07 AM CDT
There is not too much new to report today. We didn't see any of our specialists yesterday. Austin's CT scans are showing some improvement every day, and his head looks almost back to normal. He is just adorable and looks like any other baby except for his bandage. It is so hard to believe what they are saying when you look at him. The only bad thing that happened yesterday is I came down with mastitis. Also Austin is having a hard time getting back into nursing. But those are things that will be better in a few days. Our neurosurgeon will be here today and hopefully he will have some information about when we will transfer to Childrens. I am hoping that when we get there we will just be doing testing and evaluation and not staying that long. The older boys are coming to visit again today after Aidan's soccer game, he asked that he could stay here all day Saturday & Sunday since he doesn't have school. I know both of them really miss me and I really miss them. I am really overwhelmed by the amount of prayers and support and the kind notes from everyone, especially those I have not been in touch with lately. That is one positive of a situation like this, you can really appreciate how important the people in your life are. So thank you everyone for reminding me that there are still blessings even among the most horrible circumstance.

6 October 01, 2007 at 11:45 AM CDT
Our game plan has changed, now they have decided that we are not going straight to Childrens Memorial. The specialist that is going to be taking his case is not going to be in the hospital until Wednesday so there really isn't any point. He was released yesterday by his neurosurgeon to go home, but he will need to remove his stitches in a week or so and he will have to decide when Austin can begin any treatment. So we are going to have an MRI scheduled today which,now that the fluid is gone from the brain, will show whether he has the nevi (like the birthmarks on his skin) growing in his brain as well. This is important because if he does the diagnosis of neurocutaneous melanosis can be confirmed. Although we do need to get the diagnosis in order to find out what the course of action is, this diagnosis is not a good one. It is rare enough that there is no set course of treatment for it. For instance, if a person has a brain tumor of a more common type there is a protocol for what they try first, etc. But for this the treatments are experimental. Unfortunately the prognosis is also not good. The staff here has told us widely differing things about prognosis and life expectancy, and medical journals don't agree either. This is partly due to the small number of people who have this condition. However, in general the news is not very hopeful. Our definition of a positive outcome is very different from what it once was. But we are still of course praying for a miracle. In our opinion it is still possible that an experimental treatment can work in our case, even if it hasn't worked for others. But on the other hand we are realistic about what we can expect. As I said the other day, it is hard looking at him to imagine that he is dealing with something so serious. We are going home tomorrow and we will see our specialist, who is a pediatric neurooncologist (who deals only with children with brain lesions or tumors), on Wednesday as outpatients. Then we will also see a pediatric dermatologist. We will follow up with our pediatrician for his medical issues (low sodium level) and our surgeon for his stitches. If the neurooncologist decides that he needs treatment it will not be able to start until after October 10 because a treatment like that would be geared to destroying rapidly growing cells in the brain and we don't want it to kill off his newly healed cells from after the surgery.Please keep praying for a miracle! And keep our other kids in your prayers as well as they have a lot to deal with too.

7 October 02, 2007 at 09:52 PM CDT
We are finally home. It was a very long day at the hospital. We thought we would be home in the morning or by lunchtime but our neurosurgeon decided Austin needed an x-ray to find out if his shunt was disturbed at all during the MRI yesterday, and that took a lot of time. Plus other things kept coming up and finally we didn't make it home until after 6pm. The neurosurgeon and our attending physician at the PICU told us that the MRI did show the melanin deposits on the brain that are characteristic of neurocutaneous melanosis. Our neuro-oncologist is going to look at the films of the MRI tomorrow and make her diagnosis. Hopefully she will then discuss treatment options with us. We are going to see her in Chicago at 11:00. We got a lot of information on our own from journal articles we ordered from the hospital library. Unfortunately they were not very encouraging. I joined an internet based group for parents of children with congenital nevi. I found out that there are very few people in America or even the world with this condition, particularly because he has only the smaller "satellite" nevi and not one "giant nevus". The data that this group has collected states that out of 1600 members of the group (all of whom have congenital nevi of some kind), only 17 have only satellites. Neurocutaneous melanosis (NCM) is in itself extremely rare, but those with his symptoms are even rarer. We are physically and emotionally exhausted. We are very fortunate to have the help of our parents and siblings to help make Aidan's & Liam's lives as normal as possible as we go through all of this. I will update tomorrow after meeting with the new doctor.

8 October 04, 2007 at 10:40 PM CDT
I've kind of been putting off doing this update. I will start by saying that it has been great being home and Austin seems to be doing fine, he doesn't seem to be in pain, sleeps & eats normally. We met with the pediatric neurologist on the oncology team at Childrens yesterday. We liked her, she gave Austin a thorough neurological exam. She explained that they saw the lesions on the MRI that we were hoping were not there. Unfortunately they are on the spine as well. She had us meet with the pediatric oncologist at Childrens. He seems to be very compassionate and caring. He referred to Austin possibly having leptomeningeal melanoma. When I asked if that is the same as neurocutaneous melanosis he said that it is actually the malignant progression of neurocutaneous melanosis. We were obviously stunned that we already had this horrible diagnosis and now find out that it may be even worse. He said that he cannot make this determination without a tissue diagnosis which they would get by doing a biopsy of some of the brain tissue. He said that this should be done as soon as possible as it is a rapidly progressing condition. I talked to him this evening and we are going to meet with the neurosurgery team at Childrens on Monday and plan for the biopsy on Tuesday. It seems like at this point "good news" would be that he has neurocutaneous melanosis and not leptomeningeal melanoma. In the last few days I have talked to 2-3 people who have children with NCM that have been living with it. One child is 11 yrs old now. So, NCM is bad but can be survivable. Leptomeningeal melanoma is also extremely rare. The only good thing is that Childrens had another case of this recently so they have seen it before (once). As you can imagine all of this is incredibly hard to hear. We are trying to manage things one day at a time. I am trying really hard to focus on today and not project too far into the future. Sometimes I succeed at this but other times I don't. Tomorrow we have to take him to get his sodium level checked. It is too low and we have to give him supplemental sodium orally which he absolutely HATES. We really hope his level is on track so we can stop doing that. Then we will go to our pediatrician and to the neurosurgeon that put his shunt in to get his stitches out. Please keep praying for us. We need a miracle.

9 October 06, 2007 at 04:18 PM CDT
This weekend we are at home doing normal things like going to Aidan's soccer game and Aidan even has a birthday party to go to. We are trying to just relax since we are all at home for a few days. Sometimes I even forget that things aren't like before. Yesterday we saw Austin's neurosurgeon, the one who put in the shunt. He said everything looks good with the shunt and it seems to be working well. He got his stitches out, and was so mad that he was kicking and punching us while we were trying to keep him still. He is quite a little fighter, holding his breath and screaming. We talked to the pediatric neurosurgeon at Childrens, the one who is going to do the biopsy. We are going to see him Tuesday morning in person and then he will do the biopsy. We are really nervous and scared about it but it has to be done to get the firm diagnosis. We have to know what we are dealing with here before treatment decisions can be made. They said Austin will have to stay in the hospital for a few days after the biopsy. I am getting the feeling that the "accomodations" are not like Central DuPage where we had our own room. He will be staying in the critical care unit and there are 6 other beds in the room. They said I can stay there on a fold out chair, but only one person can stay. Unfortunately we still have to give him the nasty sodium supplement every 6 hours. But otherwise he is really doing fine and you would never guess that he has such a serious condition. Tomorrow we are taking Austin to church for a blessing. He was already baptized in the hospital (my mom baptized him before his first surgery) but this way we get to participate in the ceremony, he will wear his christening gown and we can celebrate him joining our family and the church. We continue to be moved by all the support and kindness from everyone. Thank you so much from all of us.11 October 09, 2007 at 05:06 PM CDT
We went for the surgery today, but Austin's potassium level was high and the anesthesiologist wouldn't do it (the high potassium can cause problems with his heart). Then (after 3 different needle sticks, 5 counting the preop labs yesterday) they decided his level was fine! But at that point it was too late to do the surgery since they had asked me to feed him when they canceled it. So to make a long story short we had to reschedule the surgery for next week. The concern at this point is that the new neurosurgeon at Children's thinks that the shunt is failing (not draining the fluid the way it should) so that may need to be fixed as well. He also thought they should do a spinal tap while he is under the anesthesia to test that fluid. So it will be another long week of waiting, but at least we will be at home doing it. We did get to see the MRI films for ourselves and the surgeon did a really good job of explaining everything to us. Thank you so much everyone for your prayers. We are so grateful to have such wonderful friends and family. Your support has meant everything to us as we go through this. We will be sure to update as soon as we know anything new.

12 October 11, 2007 at 05:09 PM CDT
Just to let you all know, the surgery has been rescheduled for Monday morning.
13 October 16, 2007 at 05:17 PM CDT
Sorry for the delay in this update. I didn't have a laptop at the hospital this time. But now we are home so I have a chance to let you all know what is happening. Austin had surgery on Monday morning, a biopsy of the brain tissue, a spinal tap to culture the spinal fluid and a valve replacement on his shunt because the other one was in the wrong place. The surgery itself only lasted a few hours. The surgeon said the pathology report should be back in about 3 days. The shunt placement went fine and the fluid that had been building up has drained out. His recovery went much better than last time. He didn't have any complications and so we got to leave today (Tuesday) to go home already. He was nursing right away and seems to be comfortable. Children's Memorial is wonderful. The staff and doctors really went out of their way to help Austin to be comfortable. Just little things that made a big difference, like the anesthesiologist carried him to surgery wrapped in a warm blanket instead of pushing him in the crib. It is a totally different experience there because we were in a constant care unit specifically for neurosurgery patients who all have very serious illnesses. We are awaiting the news about his diagnosis and will be enjoying our time at home. Thank you again for all of your support and prayers!

14 October 19, 2007 at 04:11 PM CDT
We have received a preliminary diagnosis from Austin's biopsy. There is no evidence of cancer at this time! This means we are still looking at a serious condition, neurocutaneous melanosis, but that there is no melanoma. We are not sure what the treatment plan will be yet. We go back to Childrens to meet with our neurologist and neurosurgeon on 10/31. But in the meantime this is great news and we are very relieved. Thank you for all of your prayers! Austin is 8 weeks old today and continues to do quite well in his recovery. He has even started smiling and is really interested in looking around and seeing things now. We will continue to update with any news. We appreciate all of your support and kindness more than you will ever know. Thank you so much from all of us!

15 November 02, 2007 at 08:03 PM CDT
We visited Childrens Memorial again on Halloween to see our pediatric neurosurgeon, Dr. Tomita, and our neurologist, Dr. Keating. Dr. Keating was quite impressed with how well Austin is doing. The only concern is that he doesn't lift his head as much as he should at this age, so we are beginning the referral process for Early Intervention to receive some baby physical and occupational therapy. She feels that even though his biopsies have come back clear at this time, it is very likely that at some point in the future the malignancy will develop. She said that the older he is when/if this happens the better it will be for him because his body will be stronger and more able to withstand the treatment. The lesions that are on his brain and spinal column are there and will need to be closely monitored. Dr. Tomita took a sample of his cerebrospinal fluid from the shunt (the shunt has a little reservoir that he can easily tap for this purpose) to send for more testing. We should hear about that some time next week. Then Austin will have another MRI on 11/20 to make sure none of the lesions have gotten larger or more ominous looking. His last MRI was 10/1. We felt all of this was pretty encouraging. Austin is doing great at home, sleeping and eating well, and very social. He smiles all the time now and even laughs. It is so wonderful to see. He even gets to reduce the amount of sodium supplement he is taking and that is also fantastic news as he absolutely hates taking it. He screams and cries and having to give it to him 4 times a day was excruciating. So now he is down to twice a day and we are so glad. We get a break for a week or so here with just our pediatrician visits every Friday until the MRI. We will update next week when we hear about the pathology results from the fluid taken on Wednesday. Until then, thank you for your continued prayers! They are definitely working. I wish you could all see him.

16 December 18, 2007 at 06:03 PM CST
I just realized that the update I wrote a few weeks ago never actually posted to the site. So I will attempt to remember some of what I wrote to bring all of you up to date on what has been going on with Austin. On November 20 we took Austin to the Children's outpatient center in Westchester for an MRI of his brain and spine. We met with Dr. Tomita the neurosurgeon the next day at the main hospital in Lincoln Park and he said that the MRI showed no change. So that is good news. More good news, we don't have to go back until February when he will have another MRI and see both Dr. Tomita and Dr. Keating (the neurologist) at that time. We also saw Austin's pediatric dermatologist, Dr. Wagner, for the first time on the 20th. We were very impressed with her. She currently has 2 other patients who have Austin's condition (NCM), in addition to consulting with one of the top plastic surgeons (he happens to be at Children's as well)who sees patients with giant congenital nevi, so she is quite familiar with it. This was a great thing to hear! She did not see any areas of concern in Austin's nevi and said there is no reason to consider removal or biopsy of any of them at this time, which is good news also. She feels that the chance of any of the lesions on his skin becoming cancerous is less than 5 percent. Her comment was that Austin himself may want to consider removal of some of them in the future strictly for cosmetic reasons, although 3 of the 5 lesions are on his back & buttocks, but there are two small ones on his lower leg and hand. She felt that "maybe when he is in high school" the one on his hand will bother him. I told her that she is the first medical professional to even bring up the possibility that he could live long enough to go to high school. She said that this is upsetting to her, that no one should be making judgments about how long he will live because absolutely NO ONE knows. So little is known about this condition that people are just making guesses. She said there is no reason not to hope. Needless to say we thought she was wonderful. Since then, Austin has been doing great. He is only taking one medication now, just phenobarbital at night. (No more yucky sodium supplement) He is becoming so social and vocal. He laughs often and has started reaching for objects. He is absolutely crazy about his big brothers, they can always make him smile and laugh. He has an evaluation for physical and developmental therapy this week, but he has improved so much since the referral was made I am curious what they will say. We hope you all have a Merry Christmas! As I'm sure you can imagine, we are expecting this holiday to be even more special than ever since we are so thankful to have Austin with us and so appreciative of our family and friends. Your support has meant so much to us and we wish you and your families a wonderful holiday.

18 February 15, 2008 at 12:09 PM CST
Austin had an MRI this week and I am happy to report that the news was really good. Several of the areas of concern are either much smaller or not there at all anymore. Our neurosurgeon said this could be a result of healing after surgery, that some of what they were seeing previously was in fact hemorrhaging from the surgery. We are thrilled with the news. Both our neurosurgeon and neurologist are very encouraged. The nurses at the brain tumor clinic commented that they rarely see fat, happy babies there so Austin made their day. We are also going to have an EEG done later this month to determine if he is having any pre-seizure activity in his brain. As you may know he is still taking phenobarbital to prevent seizures as a result of some seizures he had post surgery back in September. If the EEG shows that he is still having this activity we will stay with the medicine, but if it shows that he is not we will start weaning him from the phenobarbital. This would be good because it can have some long term effects that we would like to avoid if possible (although preventing seizures is top priority). We are feeling quite relieved right now and enjoying every day with Austin. He just gets cuter every day and we all love him so much. Please keep him in your prayers, and please pray for a cure for NCM and the other children afflicted with this condition as well. We just heard very sad news of another child with NCM, only 2 years old, who died this week. So needless to say a cure and prayers are desperately needed. Thank you all so much for your continued support!

19 March 22, 2008 at 08:43 PM CDT
I'm coming back to all of you tonight asking for more of your prayers for Austin. A month ago he started having some episodes that we thought might be seizures. He had an EEG on 2/28 that was normal so our neurologist thought that maybe the episodes weren't seizures. Unfortunately they kept happening and started happening more frequently. We increased his medication because the blood test showed that the level of medication wasn't really high enough to prevent seizures anymore. That was on 3/19, and at that point he hadn't had a seizure since 3/15. But on Thursday night he had one again, and since then they have been happening pretty much every few hours. We are hoping it is a medication issue and once his blood level catches up he will stop having the seizures. But we still don't know why they started in the first place and we are pretty concerned about it. The seizures he is having now are very brief and someone outside the family probably wouldn't even know that he is having one, but they are still seizures and Austin doesn't seem to feel like himself on days when he has them. This is a setback and that's why I am asking for your prayers. I will feel a lot better knowing that all of you are out there praying for him. Thanks so much and have a great Easter.

20 March 26, 2008 at 05:12 PM CDT
Hello friends and family, We just got home after being at Children's Memorial today and yesterday. After 4 days of increasingly more frequent seizures we finally had to take Austin to the Emergency Room on Tuesday 3/25. He had been having seizures every half hour since waking. The seizures continued throughout the day. At the ER they did a CT scan and X-rayed his shunt to make sure it was working properly, and it is. Apparently it can cause seizures if it is not so that is imprortant to find out. At this point we were still not totally sure that he was having seizures because they are not the "typical" presentation, and his previous EEG was normal. Then they did a blood test to determine his phenobarbital level, which was still low (in other words not high enough to prevent seizures). So finally they gave him a mega dose of phenobarbital and after some observation we got to leave (we were there for 7 hours!). Then today we had an appointment with our regular neurologist. Austin only had one seizure today and luckily it happened right in her office so she got to see it happening, and she said that she really does think it was a seizure. So we are adjusting his medication and hoping it will take care of the problem. So far today he is doing much better and seems more like himself, so we are hopeful! Thanks for your prayers and please continue to pray that we can get a handle on this.