Update

The infectious disease doctor wants him to get a pic line in today this is something we can go home with. He needs it to get the IV meds he is getting for his infection. We still do not know when we will be leaving Memphis but at least we are working in the direction to do so.

He is a good mood today he is having therapy OT and PT as I am typing this and is doing a pretty good job throwing the balls at the board.

Dr Sanford took off this head bandage this morning and said the area looks good.

Update

Not to much to say but thought I would post about his how happy he seems to be these past few days. He is up in his special chair watching a Barnyard and playing with some animals smiling. We did try his speaking valve this morning and he was trying to say wagon he wanted to go for a ride. So hopefully the more he has it on he will get use to it and be able to talk sooner then later. i do miss hearing that sweet voice of his and the last thing he said to us was i love you mommy right before being wheeled into surgery.
Still no news on when we will get to go home for sure but hopefully it will be sometime next week. I know that when we get home we will have to get use to being home alone with him. So hopefully that first day or so we can relax and spend time with Carter and Christian and just be a family for bit. It is hard being away from the little guy this time around and I know Christian is missing him as well. Have to go for now he needs suctioned again.

Surgery Update

Christian made it through surgery ok he does have an infection but its not in the wound so that was the good news he did put the bone back also. A stitch on the inside came out and that is what caused the infection. He did get a port put in for his meds and that will come out when those are finished. He did however have to get a blood transfussion for his hemoglobin was low. He made it back to the room around 5:30 (memphis time) and has pretty much slept since. He does wake up to make sure we are here with him though. So I guess we will see how the evening goes.

Surgery

He is headed to surgery in just a little while the doctor is going to take his take off part of the bone and clean out the area and decide if he will put the bone back after he is in there and sees what it looks like. He does have an infection the question is now where exactly is it in the actual area where surgery was done or the incision. This will put us here at least another week. Please pray that things will go good and he will heal soon.

Also we just found out that his friend Johnny was admitted here lastnight for an infection and will have surgery as well so please keep both boys in your prayers.

Fevers

Well we have said we may get to come home Thursday but now we may not. Christian has had a few fevers over the past day and half and now some leaking from his incision. We are not sure yet how this effects anything until the doing takes another look at him. We are praying its nothing serious.
On another note our new friend Johnny came back in town Sunday to start his radiation so we are asking that you say an extra prayer for him and his family while they endure this adventure.

We met another family in ICU there baby is 6months old with hear issues so we are asking for prayers for them as well.
Thanks everyone for the prayers.

Update

Christian had a pretty good weekend. We have been cleaning the trach area by ourselves now and are trying to get the hang of it. We will have our last training on Tuesday morning and then in the afternoon have the training on his new equipment for home. So at least we feel like we are getting something accomplished. They are saying that Thursday is our targeted day to leave so we will see. He had his measurements for his new wheelchair or stroller so we will have a way to get him around.
We will update when we know more.

Here is Christian with his new friends Bernard the puppet and Nicholas, and of course what he loves to do take wagon rides!!!

Update

Christian so far has had a good day today, he has been smiling and playing around with us. He had therapy this morning so that wore him out.
We had our cleaning lesson today for the trach it will definitely be a two person job one to hold the trach in place and one to do the actual cleaning/changing. It wasnt to scary but then again we are in the hospital so we had help if would have needed it. They want us to do it his weekend on our own to get use to doing so. Then on Tuesday we will have our final lesson on how to change it out so that should be fun.
Looks like he will be transported home by an ambulance at some point next week. We have to finish our trach training and then do our homecare training for the new equipment. So hopefully things will go as they are planning.

Sorry

For those that have tried to call us yesterday sorry the phone ringer was turned all he way down and so it was not ringing in here. I was trying to turn it down so that it would not wake up christian and looks like I did it to much.

On the other hand he had a good night sleep lastnight. Slept the whole night which was nice for mommy and daddy. We had to suction him when he woke up and that was it.

Update

The past couple of days have went good. We dont have to suction all that much. He got to go for a wagon ride lastnight and he did not want to get out. He also had some PT/OT he got down on the mat and did pretty good for his first time. He will continue to get these while we are here. Hopefully that will help him to recover faster.
We set up a email for Christian for those of you who have trouble posting on here you can email him and he will still get the messages. I do read them to him so he knows who all is thinking about it. christianshowers@yahoo.com

New Room - 5609

Yeah!!!! He is out of ICU as of tonight. His new room is 5609 and his number is 901-287-5609 if anyone would like to call us. Daddy and mommy get to get out for a bit tonight and grandma will sit with him.

These are just a couple of pics that were taken before his surgery and we thought we would share them!

Trach Surgery

He was put back on the vent today to help with resting since he has not slept in 48 hours or so and to get ready for the trach surgery tom. we are not sure what time it is all we know is they are doing it. We are scared about this for it will be alot of work and so on. They keep telling us it wont be as bad after its done but we are just nervous right now. That may be true but it still doesn't change the fact that he is getting one put in.
He is having fluid problems from the surgery the doc came in today and put another stitch to try and help that way and while is in surgery tom. he wants to go and add more if need be. If this does not settle down then he may end up with a shunt as well. So as you can see this has not been the best week for Christian or us. We are mentally, emotionally and physically exhausted.They say that if things go well he should be in a regular floor by monday of next week.

Johnny Sileno

Our new friends the Silenos had a bump in the road on Wednesday and decided to stay in town for observation with concerns about Johnnys head so please keep him and his family in your prayers.

Prayers Needed

He saw the ENT doc this afternoon he let us look into it as well so we could see what he was seeing. He strongly feels that he should get the trach on Friday, he said it could temporary. So we are asking for all the prayers that he will get better before then and not have to go through yet another surgery. Thanks!

They took him off the vent yesterday morning and he did ok all day and through out the night. He is suppose to see the ENT docs today to see if his cord is working or not. They keep bringing up trach so we are praying that it does not go that way.

link

Here is a link about Christians doctors and nurse (which we love) if you wanna take a look!

http://www.commercialappeal.com/mca/local/article/0,2845,MCA_25340_5509153,00.html

We got the pathology report back this evening and it is indeed scar tissue! They have started taking him off meds and lowering his O2 today to get ready for the vent coming out in the morning. Now we are praying that he will be able to handle that and that his vocal cord is working now. He did kick his left leg tonight when they tried putting his foot support on. So we know he can at least move that. I will try to update more as things happen.

Christian is doing better today his stats are staying at least above 90. They took him off on of the sedation meds to see if waking him up a bit will help. He is awake now watching some cartoons and when he sees something he likes he makes me look with him. He does look good today but they arent sure if he will get off the vent on monday it all depends on how he handles everything.
On the other hand we are missing Carter wishing we could give him hugs and kisses.
We also met another family from NY with the same tumor as Christian among talking they have alot in common his name is Johnny please keep him and his family in ur prayers while they are here.
Today is a better day for us seeing Christian awake and somewhat himself. He still isn moving his arm or leg so hopefully in time that will change as well. Thanks for all the prayers I believe they are working!

Update

This morning was not a good one Christians O2 levels kept dropping and they did not know why he sounded good, looked good, They gave him some medicine to help him pee so that if there was fluid it would help that to. They turned him up to 100 % and have started going down now he is at 50 on the O2.
It was very scary to be there and watch as the nurse looked worried. We are praying that things will start moving in the right direction.

Update

Christian is now on the breathing machine around 11am today he was having a hard time doing it on his own. We are not sure when they will try to take him off again they have given him high dose of steroids to help with the swelling so maybe that will help him out a little. We can not wait for him to recover from this and to hear what exactly it was. Thanks for all the prayers

Post-Surgery

Christian is now in the ICU recovering from surgery. The surgery went well and all of the tissue in question was removed. The reason I say tissue is because the Surgeon believes that what he removed was scar tissue possibly caused by a previous surgery or radiation. Hopefully Christian will be moved to a regular room by Wednesday, depending on how well he recovers in the ICU. The current concerns are his breathing and some mobility issues on his left side. Thank you to everyone for your continued prayers. We will continue to update the site as we learn more and get a chance on a computer.

Christians surgery

Christian is having surgery in the morning and after he recovers from that he will be having 6 weeks of radiation here at St Jude. So please everyone pray that this surgery and doctor will be good. Ill update when we get the chance to get on the internet again. Right now we are staying at a St jude house and dont have internet access all the time.

I finally caught one!!!! It was sooo much fun!

Fishing

Here is Christian and Heather waiting for the fish to bite! Nothing this day but maybe today.

Little update

First off I wanted to say that we made it to WV. And also we talked with Dr Merchant from St Judes and he wants to meet with us on Monday to go over Christians past radiation records to see if he is able to get another dose after a sugery to remove the tumor. We have not made up our minds as to where we will be getting this all done at. We want to hear what all the doctors say and then make our decision. Please keep Christian and the family in ur prayers while we travel down to Memphis and back.
I will update the site as we find out information or decide what we are going to do.

Awareness Product

I wanted to add this link my sister had a design made up for Christian.

http://www.cafepress.com/ihope/2835919

Bad News

We got the phone call today that we did not want to hear, The area they were concerned with is in fact a tumor. The doctor said we could just watch it, surgery or gamma knife. Im not sure as to what road we are taking just yet since we have just found out this new information. We are still waiting to hear from the doctor in Memphis and then maybe we will know which direction to take. The NS here thinks surgery it the way to go right now. But as I have said we are waiting before we decide which direction to take. We also have BT clinic next week so maybe they will give us more information.
Please say an extra prayer for our little guy.

MRI

Chrisitan had his mri on Monday his doctor seen an area that is concerning it could be 1 of 2 things ,1 the tumor is back 2 its effects from radiation. We now have to wait until they discuss his case in Tumor Board with in the next few weeks then hopefully we will know more or at least which way we are going. So we are asking for those prayers that this is just side effects from radiation and not tumor.
We will post when we find anything new out.

Here are my cuties all ready for easter!

MRI

I wanted to remind everyone that Christians MRI is for Monday the 2nd. This one is brain/spine. Please keep him in your thoughts and prayers. I will update with the results as soon as we know.

pics of eye surgery

Here is Christian before surgery, the day of and two days later with his jello face.

Eye Surgery

Christian finally had the eye surgery this morning. Everything went well she did a temporary stitch on the side by his nose and a permanent by his ear. We are hoping this will help clear up his cornea and have his eye better. Other then that he seems to be doing pretty good still a little sleepy, and enjoying the pile of suckers the doctor gave him. Hopefully the temp stitch can come out this summer.
Thanks for the prayers

Eye Surgery

Is scheduled for Tuesday the 20th. He got medical clearence from the ped today so now its up to the dr at the hospital on Tuesday. Hopefully this time around this will be done.

Eye Surgery

Is now cancelled. When he went in today for his medical clearance they found out he has a ear infection and had a temp of 100 so the doctor does not feel comfortable putting him out for the surgery. So now it is for the 20th. So lets hope he isnt sick!!!!

Eye Surgery

We finally have a date it is set for March 5th. So now we have to take him to the ped. for a medical clearance report and he is set to go. I only hope that this will be the trick to make his eye get better instead of getting worse. So please say an extra prayer for him.

Hearing test/eye appointments

Christian had a hearing test done yesterday to check his left side and as of right now it looks pretty good. They want to do another one in about 6 months.

As for the eye dr he say the ophthalmologist this morning and he is now wanting him to wear a patch for 3 hours everyday until he goes back in 3 months. So now we have to figure out how to keep it on him.
The Cornea dr wants to do the stitch surgery after all she feels that he eye is getting worse everytime we go in. So that will probally be happening in the next few weeks. This is so the contact will stay in longer and hopefully keep more moisture in.
As soon we we know more we will update everyone.

Sabres Game

Hi everyone Christian and the family went to the sabres game lastnight and had lots of fun. Christian played with the little kids and enjoyed the game. Here are a few pics of our night. They played the Oilers and won 2-1 in over time.

Update

Latest update is we still are no further with the nerve graft issues then we were a few weeks ago. We did talk to his surgeon but he wants to wait until after his next scan in April and discuss it then.
On another note Christian is out of school for a couple of days with a virus. So hopefully the meds will kick in and make him feel better. It will be good when winter is over and all the kids at school arent sick!

Possible Surgery

The Dr's have now thrown out the idea of doing a nerve graft on Christian if it does not come back after a year to 18months post surgery. March 22nd will make 12months. After that they will not be able to do it for they are afraid the nerve will be dead by then.
We have talked with a few other doctors to get there opinion and so far everyone is agreeing that we should have it done. The eye dr says it should help with closing the eye which in return would hopefully help the problems we are trying to fix now.
I feel 50/50 on this yes I would love to see his beautiful smile again but I dont want him to have to go through anymore. We are still waiting to talk with his NS Dr Li so we can ask some more questions. So for now we wanted everyone to know what is going on so far and when we know more we will update again.

MRI Results

We just got home from brain tumor clinic today and with good news all around they said his scan look good, they arent worried about the artery right now they will take a closer look at it in 3 months at his next MRI.
The dentist also said his teeth are also fine infact they are suppose to be shorter like they are now and that it wont effect his adult teeth.

Thanks for the prayers

MRI

It looks like we wont be hearing anything about his MRI that was today for all of the doctors appear to be off. So if we do find out something I will repost the results.

On another hand we got home today and noticed Christians top front teeth were broken right in half. They do tell us everytime that this could happen, but the dr today said they type he was using shouldnt be a problem(what the put him to sleep with). So now we are trying to find out what we are suppose to do about this new problem. But with everyone off today its making things a little difficult. So hopefully sooner then later we will get answers to both.

Thanks for the prayers

eye update

Christian went back to the eye dr today and even though his contact fell out again she did say his eye is starting to look better so I guess that means the contact is doing what its suppose to do. She did put in another this morning but this afternoon it fell out to so I had to replace it again and hopefully this one will stay in for the next two weeks until he goes back.

On the other hand he did have a very nice xmas. He was excited over the toys and electronics so much that when he got to the clothes he said o clothes and threw them out of his way.
It was just nice to see him so excited this year, he put cookies out for Santa and was surprised to see that he came and ate them :)

Again his next MRI is Jan. 15th that is if he doesnt have a cold, if he does then they will not be doing it. So hopefully that will not be the case because right now its the only thing that is making this process a little easier.
Thanks for all the prayers

We wanted to wish everyone a Merry Christmas and Happy New Year!

little update

Christian just made it back from the eye dr this time it was for pink eye so we thought but turns out he does not have that. But how ever she did put a contact lense in to try to help out with the moisture issues. So hopefully it will stay in place and do what it is suppose to.
He has a bit of a cold right now gotta love pre school.
He is getting excited over christmas coming soon he really wants a choo choo and he even told Santa that is what he wants.
He goes back next week for a checkup so I will update then.

Sabres Game

Here are a couple of pictures of Christian at the Sabres game on Friday the 1st. He had a blast that night and is still talking about the hockey and the ice. And by the way the won the game that night.

Eye Dr

Christian went to the eye dr today and she says his eye is looking better the white film that was on it looks better the before. She wants to see him again in a month to check it and his vision. Today his vision was 20/60 in the right eye and that was all he would be good for. He is on lots of eye drops to help with moisture. The plug is still in the top so thats good and his lower duct is healing well.

On another note he along with the rest of us has been sick all week so hopefully everyone will get better sooner then later.

His next MRI is scheduled for Jan. 15th so hopefully we will be able to enjoy he holidays. Thanks for all your prayers!

Can you also keep a little guy name Dakota and his mom in your prayers things for him arent going so good and its only a matter of time now. Thanks everyone

Christian and Carter.
We did not get any of these pictures for we werent there for that reason but I wanted to share with everyone how cute the little men are!
Carter will be turning one Friday the 17th and all Christian is say he wants more cake!

please do not save pictures from the site!!!

Post op eye appt.

Christian went in today for his follow up after surgery and she said it is healing well. She did give another eye drop to help during the winter months. But all is good for now.

Eye Surgery

Christian had his eye surgery today and all went well. The dr burned his lower tear duct to help with moisture she did not do the stitches because she noticed that his eye is a littler better today then the last time she saw him so that is good news. He was pretty good all morning and was treated like a king. As usual all the nurses loved him. He has a follow up appt. in one week so hopefully all will still be good. Thanks for the prayers

Halloween pics

Here they are mr buzlight year and blues clues arent they just the cutiest boys!

Eye Appt.

Christian's eye procedure will be Wed. Nov. 1st it was resheduled due to the weather we had last week. This was hard decision for us to make because he has been through so much already and we hate putting him through even more so hopefully in the long run we will have made the right choice. Please keep him in your prayers that everything will go alright. Thanks

MRI Results

We just got the MRI results and it was clear!!!!!!!!!!!!!!!!! Thank god for that. We can now breath a little bit.

BEFORE/AFTER:

MRI/School

Christian has another MRI on Tuesday the 10th I believe this one is brain and spine. Please keep him in your prayers and that the MRI is a clear one.
He is doing good right now he has been in school for a little over a week and seems to be liking it, but riding the bus is a different story he doesnt want to get on it still.
Whenever we get the results I will update it could take up to a week to get them. Please keep us in your prayers as well with everything coming up this week im a little bit of a wreck. Thanks update more later

B-Day Party

We want to thank everyone that came and for the gifts. He had a great time playing with all the kids. Its was good seeing him have fun this year it sure was a big change from last year.
We would also like to thank his nan and pap for all the hard work they did to get ready for his party.

School

Christian is now a school boy! His first day was a good one he played and had a good time. Today was good but he did get a little sad once. He rode the bus for the first time today and was excited about getting on it, I on the other hand was sad. Its still a hard to believe he is old enough for school. He said he did make a couple friends already so that was good to hear.

School Time

So Christian will finally be going to school!!!! His first day will be on Thursday the 26th. We did take the tour and they are ready for him he has his own locker and a bear on the wall with his name. I will try and get some pictures to share with everyone when the big day happens. Please pray that he will be alright and that I will be alright also :)

CMN

Hi everyone I thought I would add this picture. Christian was the Childrens Miracle Child this year on the balloons sold at TOP's this past summer and we went to a press conference the other day so they could announce that they are promising to raise 1million dollars over the next 4 years for the hospital and this was a picture of one of many checks to come. Please check out the link for the whole story! And please check out the other one.


http://www.wchob.org/news/news_display.asp?artID=582


Local Celebrities Pair with Children’s Miracle Network

Eye Appt./School

Yesterday Christian went to the eye dr. He said good and bad things he was pleased that his eye is moving now but is still worried about the 7th nerve which is the one that makes his eye close and his face move. So now we have to hope and pray that the nerve will come back like the 6th one did.

We also had a meeting with the nurse at school and as soon as the dr feels out there part of the paper work saying what Christian needs done while at school is turned back in he will be able so start so hopefully within the next few weeks he will be headed off. The school is nice and big he ejoyed going and looking around at all he stuff they had there. He wanted to stay and play. As soon as we know more on both of these we will update you again.

Make a Wish

These are a few pictures of Christian on his Make a Wish gift. As you can see he loves to play on it. Thank you MAW

Walmart

Christian is now the CMN child for walmart in lockport. (Childrens Miracle Network) for the hospital. We would like to thank them for the presents they gave to both boys Christian has played with the blocks everyday since. It was nice to meet each and everyone of you. Thanks again. I forgot to take the camera so next time we go I will try and remember it.

School Time

Our baby is going off to school. They had his CPSE (committee on Preschool Special eduacation)
meeting yesterday and decided he is eligible for school for full time thats right full not part :( . So in September not sure as of when yet still have to get the rest of the details, he will heading out the door. I feel that it will be easier for him then me :)
He will continue to get all of his therapies at the school (so he will actually be getting the speech and ot now) so this is good news. When we find out more info we will be sure to let you all know.

Eye Appt.

Christian saw the cornea dr today and she said his eye is looking better however there are still a little irratation to the eye but she wants to wait and see him in 6 weeks so at least thats a step for slowing things down a little. She wants him to see his other eye dr for better visions checks and he will go there in Sept. so wait and see what he says.

We made it back from WV yesterday it was a nice trip but a long drive back. Christian had a good time and thats all that matters. He went fishing while we were there and caught the only fish so he was excited about that one. And he loved watching the Choo Choo trains, dont know what he will do now we are home and there isnt any to look at.

more pics

Just a few pics of Duke University and one of Christian and his pap that whole reason we were there




dont know what happened to this one but its all I had with these two.

pics

Few pics from our trip to NC

Christian on his John Deere (watch out everyone)

little update

Christian is now on vacation and so far he has had a good time. Running after nan and pap and the doggie. He has been running around here like a mad man and enjoying all the extra attention.

Eye Dr

Christian went to the eye dr and she put in another plug this time it was in the top eye lid to try and help with keeping moisture in his eye we are still putting drops in so hopefully that will also help.

Christian and the rest of the family are getting ready to go on vacation so we will update when we get home or unless something happens.

Little update

Christian got to play in a putting contest with a celeberty on Sunday the 16th he was running around having a good time. He got to do this because he is one of the Miracle Makers Children and was on the Tops Balloons. Then on Monday we went to a dinner for the same thing and they gave him (and another little one) a medal. So he has been wearing that for the past few days he just loves it.
I will add a picture when I get the chance

He goes back to the eye dr tom. so we will see what she says this time around.

Update

Christian had his MRI and its looks good they said there is a few places that they want to compare with from right after surgery but there was no tumor. What they saw was from the surgery so, so far everything is good.

He also had a swallow study on Wednesday and that did not go as we were hoping. Instead of the food going all the way down it goes so far and then right back up so he is not allowed to eat right now and needs to see a ENT dr. so hopefully that will happen sooner then later so we can get him back to eating.

Thank you everyone for you prayers

Some Updates

Christian will have his 3 month MRI checkup on July 11th so everyone please pray that things will be great. This is his first after his surgery and radiation so the Dr. did say it will be alittle different because he is still healing from those. He will go to brain tumor clinic on the 12th and meet with the dr's this is also a 3 month thing.

He goes to the cornea dr on Wed. the 5th so hopefully things will still be looking good there.

He is doing pretty good lately other then a cold his speech is getting better every day and he is now using the potty like a big boy so who knows maybe be the end of summer he will be outta diapers!!!!!

Happy 4th Everyone

Photo Opp.

These are just a couple of pics that I like of Christian. These are his post-treatment pics and just look at all that hair!

Bye Bye Broviac

Christian is now wireless. He had his broviac removed on Thursday. He still has his G-Tube and will have it until he can eat better. We are excited about the broviac being out because now he can take a bath or swim and doesnt have to worry about infections being in there.
He is doing really well now. His speech is getting better everyday as well as his walking. He is acting like a happy little two year old and that also means he is getting into everything but thats OK.

Radiation

Christian is now finished with Radiation. YEA!!!!!!!!!!!!!!!!!!!!!!!!

Thank you to everyone at Roswell who helped to take care of Christian and made the process tolerable if not enjoyable.

This is the machine Christian had for treatments.
He would normally be laying down with his mask on.

Back In

Well you guessed it Christian is in once more for a infection. We do not know how long he will be in this time but hopefully he will get his line out this week and we wont have to worry about this problem any longer.

Home Again

Christian is home again they let him out Friday afternoon. He was sent home on a antibotic. Either next week or the week after he will be getting his main line out it has a few little bugs in there and his Dr wants it out sooner then later. We can not wait for that to happen.

Cornea Specialist

Well Christian saw a cornea specialist yesterday regarding some of the issues with his right eye. It has been made quite clear to us that the condition of his eye is at a very critical point and that we must take great care to insure that he will not need a cornea transplant. We are sure this is only the beginning of the ongoing care that is going to be needed to get his eye back to normal again.

Back In

Well he is in once again. The doctor called us at 2:00 this morning and said to bring him in that he had an infection in the broviac once more. So he will be in here till they get a negative culture so hopefully that will happen sooner then later so we can get outta here.

Little update

Christian is doing good. He has been spending this past week with his little brother he finally came back home. So this week has been extra crazy with Christian's therapies and dr appt. and getting to know Carter all over again. But at the same time it has been nice Christian has helped out with him and likes to hug and kiss him.

We are now down to 7 treatments so we are praying that this next week and half is going to go great.

Update

Christian went to the eye doctor today and he did say that it was looking a little better but he wants him to see a specialist to see if they want to do something different since the cornea isn't he specialty. So now we have to wait till next week to see them.

He also is down to 9 days of radiation so lets hope that everything will go as smoothly as it has so far.

He has also been walking. He started that over the weekend and has been doing better everyday. And his speech is getting better we are also working on swallowing and hopefully we can get him in for a swallow study so we will be able to tell if he is doing ok with it.

Miracle Makers

For all of you that live in the Buffalo area be sure to stop in at Tops Market and purchase a miracle makers balloon for Childrens Hospital Christians picture is on the balloon this year. Thanks in advance for helping out the hospital.

Little update

Christian has now made it half way through radiation and so far so good. He will go to the eye doctor on Wed. so hopefully we will get good news on his eye. He is still in therapy and is getting better everyday.

Home Again

Christian is home again. They sent him home on antibotics. He is doing well and is excited to be back home.

Back In

Christian is back in the hospital. He was admitted on Saturday with an infection in his main line. They have started him on antibotics so hopefully with in the next few days he will get to go home. He did have a positive culture again today so we arent sure if that will add on his stay time or not. We are hoping not but we will see. He is in good spirits considering where he is. He is still able to get his radiation thank god we did not want to put that off. We will update more when we find out something.

updating

Christian has made it through two weeks of radiation now and so far so good. He is in a good mood when we get there but when we leave he is not. But that is understandable at this point.

He has been walking more with our help so hopefully soon he will be doing it alone.

He goes monday to the eye dr so we will see what he has to say this time around.

Have good weekend!

Update

Christian has made it through his first week of radiation. He now is having bad tantrums and everyone is telling us it could be a number of things. All I know is I cant wait for this to be over its so hard on him but we are wore out ourselves.
His next MRI is scheduled to be in July so please keep the prayers that it will be a clear one.

This is the latest picture of Christian with Carter.

Christian is doing ok so far. Right now he has a ear infection which means we made our weekly trip to the hospital. Today was his 3rd day of radiation so only 31 more to go.

Radiation

Christian started his radiation on May 4th and so far he is doing ok with it. The first day he was a little cranky when he was waking up but Friday he did better he was nice and calm when I went to see him.
He also got to visit with his baby brother for a the day but he seems be happier to have us to hisself again.

Little update

Hi everyone sorry we havent updated in awhile but been a little busy. Christian was taken to the hospital on the 23rd for a fever and only had to stay till monday evening. He only had the one fever at home but his Dr. wanted to be safe with everything being so close out of surgery.

He will start his radiation on May 3rd I believe so hopefully we can get through these next 6 to 7 weeks and then let him have a normal summer.
He is starting PT again this week and hopefully OT and speech will be soon. He is crawling at this point and is saying a few words so this is at least headed in the right direction.

This is the quilt that a group called love quilts made for Christian and he took it to memphis with him and we would like to thank all the people that was involved in making this it is beautiful.

And one of him and his lil bro Carter

We will update when more later.

God Bless You Everyone

Home Again

Christian has been released once again. We brought him home Saturday morning and he seems to be happy we did. He was trying to crawl through the house and has been playing ever since. His mood seems to be better except when he has to be tied down for some meds.

He has a hearing test today. Appointment at Roswell Tuesday for his markings for the radiation, and Wednesday he will see and eye doc in the morning and BT Clinic in the afternoon (brain tumor) so for the next few days we will be busy. Hopefully within the next few weeks we will be able to get him started on the radiation.

We will update more later on.

Back In

Christian is back in the hospital. We brought him in on Monday night a little after getting home with a fever. Today they have told us we will be at least 4 more days. Hopefully they will get the infection gone sooner then later so we can get back home to relax for a while. We will update as soon as we know more.

Update

Christian was released from the hospital on Wednesday April 5th. We stayed in Memphis for a couple extra days to take him to the zoo and a museum. He had as much fun as you would expect right now but it was nice just getting out to have some fun with him. We met a really nice family while we were down there so that helped with being away from the families.

We stayed at Nora's Home while we were down there and thank god for them. The staff was nice and it was nice being a short distance from the hospital. We would like to thank them for letting us stay there while Christian was in the hospital.

As of right now Christian is doing well. He is getting back to himself little by little. He has said about 4 words right now. Hopefully once we get home he will get back into things again.

He goes to Roswell next week so we should find out when the Radiation starts ( I think)
He does have facial problems on his right side right but Dr Sandford has said that there is a 70 to 80% chance of it going back to normal it will just take a little bit of time.

We will update more once we get back home.

Thanks for all your thoughts and prayers

Out of ICU

Christian has been moved from the ICU back to the 5th floor. We will be seeing if he can walk soon. He seems to be glad to be out of the ICU. It is much more quiet up here and it also allows us to stay with him all day. It would seem that we are out of the woods as far as a trach is concerned but I don't think that we have let our hopes get up yet.

Recovery Update

Christian's recovery is slow but steady. Christian was extubated back on Friday but they had to reintubate that same day as he was unable to deal with his secretions because of his inability to swallow. Christian was extubated again today (3/27) and so far has been handling it well. I'm sure that they will want to monitor him for quite a while this time to make sure that he will be OK. If not he will most likely get a trach put in on Wednesday. This would be temporary until he could regain his ability to swallow.
Since he has no tube in his mouth now, we are able to hold him outside of his bed. I think that this is helping to boost his spirits. I'm sure when we make it out of the ICU and into a room that will really improve his mood.
With any luck we will be able to update his site a little more frequently. Keep checking back as I'm sure we will have more to post later.

Surgery was a success!!!

Yesterdays MRI showed that Dr. Sanford successfully removed all of the tumor. Christian is still in the ICU and we are waiting for the ENT group to remove his ventilation tube and evaluate whether or not he will need a trach tube going forward. Thank you to everyone for your prayers. Christian seems to be doing well and hopefully we can continue to update you with good news. The best way to reach us, while we are without an individual room here at the hospital, would be to leave a message at our room @ Nora's home (901-271-5603) or Amy's cell phone (716-310-6609).

We are here

Hi everyone we finally made it to the hospital today and was able to get an internet connection. Our travel down went pretty well. Christian watched movies or slept. The phone number for the room we are in now is 901-572-5614. His surgery time is scheduled for 7:30 am tomorrow (3/22). And after that he will go to ICU for awhile. We will try to update the site afterwards, if not tom. then on Thursday. I have a feeling we are going to get lost often while we are here. Its like a maze to get through. So far it seems like a nice hospital to be in. We met with Dr. Sanford yesterday, so that makes us feel a little more comfortable with him doing the surgery. Please continue to pray for him.

updating

Just wanted to let everyone know that we might try to update before the surgery to let you know how the trip went. Then we will try to do so again after his surgery at some point. Thanks for all your prayers.

Surgery Date

Christians surgery date will be March 22nd. We will be leaving home on Friday the 17th we are going to drive so that Christian can see his great grandma before he has this surgery. Everyone please keep him in your prayers and us while we travel.

"...boy you've got a prayer in Memphis"

Well, our options were finally presented to us. Our choices bring us to Memphis, TN. A neurosurgeon by the name of Dr. Robert Sanford, affiliated with both St. Judes and Le Bonheur Children's Medical Center, has graciously offered to perform the final resection surgery. He has more experience with this type of brain tumor and surgery. It is also our gut feeling that this is the way to go. Please pray for our journey, the surgeon, and Christian. This will be a tough road ahead.

PS: Quote from Mark Cohn's tune "Walking in Memphis". A good song.

Update

Christian's counts are looking good right now his Hemo. is 9.4 white is 3.5 plat. is 218 and Anc is 2730. We also found out that the results from his spinal tap were negative. We are still waiting to hear what the next step will be as the doctors are waiting to hear from the neurosurgeon at St. Judes and the Radiation Oncologist in Boston. Hopefully we will find that information out some time next week.