Post Norwood Day 5

I'm sorry that I've kept everybody hanging.  Needless to say it's been a very busy week. I am happy to say that Dylan is doing really good!  His surgery took place last Tuesday, May 10th, 2011. We got to the NICU at 6am and sat with and held Dylan for awhile before they took him for surgery at 7am. It was a VERY long day. We got the page on our pager to return to the NICU waiting room at 1pm and that Dylan's surgery was finishing up and he should be back in the NICU in an hour.  My parents came down and sat with us in the waiting room waiting for Dr. Lamberti to come talk to us.  Dr. Lamberti said that he was "very happy" with Dylan's Pulmonary Arteries, and that his Aorta reconstruction " is fine", however, Dylan was having some excessive bleeding that might require them to go back in and do exploratory surgery if it doesn't stop on its own.  Luckily it stopped on its own! :)   After about 30 minutes, we were allowed back to see Dylan.  It was very hard to stomach seeing him like that......... especially since we had so long to see him and his personality and to hold him and love on him before surgery. Even though I know that this is another step towards being able to bring him home, it was still hard to do because seeing him intubated and having all of the tubes coming out of him again seemed like a step backwards.  Dylan has had some ups and downs, but nothing that he couldn't handle. Overall he's doing great and headed in the right direction.  I REALLY need to get better at this blogging because it's hard to remember everything that's happened in a week.  I think that I'm going to try and post every night before bed, no matter how tired I am, even if it's short. 

Even though they have had to keep Dylan sedated for most of the time, his little feisty personality still shows through, when they go to take his temperature, or they touch his legs to check his pulse, he squirms and fusses and gets angry. One of the biggest things that I was waiting for was to get him off of the vent. I hated seeing him intubated because he would try and cry and scream and nothing comes out....... it's the saddest thing ever. They took him off the vent today, and so far he's doing great!  He's still got two more chest tubes to get removed, but hopefully those will come out soon.  They disconnected his pacer wires since he has not had to use them, they are still connected to his heart, but those should come out soon also.  Now that he is off the vent, they are going to try and start feeding him a little bit to get his bowels moving again.  I can't wait for the other tubes to be removed and for when we can start holding him again............ thats all he want's.... he wants his wubbanubs, he wants to be swaddled... and he wants his mommy and daddy to hold him.  Once he can have all of that, I'm sure his recovery process will speed up :)  

It's late for me, and it's been a really long day/night... So i'll leave you with the promise to try and do a blog entry every night ( or every other night) ...... and with a picture of a newly extubated Dylan! <3

Waiting..... Waiting..... Waiting.........

Waiting...... waiting..... waiting...... that's all we're doing today, and pretty much what we did for the last week.  Last Tuesday we got Dylan's surgery date for his Norwood Operation.  That gave us a whole week to freak out about it and was pretty much all I could think about the whole week.  That day is here. Dylan's surgery started this morning at 7am with an approximate completion time of 2pm.  Although I was scared out of my mind for Dylan to have his surgery, I knew that it couldn't wait much longer........ it was getting harder for him to breathe, he was sweating like crazy, he was grumpy, and he was just ready.  So now we wait.......... which is pretty much been our life for the last two months.... except for the last two months we've been waiting for Dylan's next surgery ....... and this time, we're just waiting for him to recover so we can take him HOME!!  Yesterday we met with one of the members of the surgical team to go over the procedure and sign the papers, and then spent the rest of the day/night with peanut.  Surgery time was set for 7am and he is the only one on the schedule today, so that made us feel better to know that Dr. Lamberti isn't on a time schedule today and to know that he wouldn't be rushing to get to the next surgery.  We woke up this morning at 5am to go across the street and be with Dylan for awhile before they had to get him ready for transport. I held him for about 10 minutes before they had to take him from me......... I was doing a good job of fighting back my tears until they took him from my arms...... Dylan started crying too ......... I know that it was because the lady who took him had REALLY cold hands ( Dylan doesn't like anything cold touching him) ...... but I like to think that it was because they took him from mommy's arms :-)  

We followed them downstairs to the OR prep area and met with the anesthesiologist ..... she called herself Dylan's sleep doctor... and signed the papers, and then off he went. :-(    It was SO hard to watch them take his crib away through those double doors.   That was 5 and a half hours ago ........ we have an hour and a half to go! So we're just waiting...... waiting......... waiting.........


Poppo came and took some pictures of Dylan, Joe, and I on Mothers Day, which I will do a post on later, but I'll leave you with a few pictures of our Happy little family <3

You Stink ..... You need a bath

Dear Peanut,
We gave you a REAL bath for the very first time in 7 weeks a few days ago. Let me tell you .... you needed it! I love you so very much, but you were a very stinky boy! Those little wipe down's that they give you just aren't cutting it. I was hoping that you might actually like it .........

 Clearly you didn't!  :)  Mommy LOVES bath's ..... I know that I wasn't supposed to really take a bath while you were in my tummy ..... but I did.... every day .... sometimes even three times a day.... and I thought that you liked them.... I would sit in the bath and swish the water around you in my belly and you would start kicking and moving every time..... so it was wishful thinking that maybe you would like the bath once you were born. ........

 
VERY wishful thinking <3

Giving you your first bath wasn't what I hoped for, and I'm sorry for that.  I'm sorry that we had to share that special moment with complete strangers as they had to help hold you and keep your right arm out of the water to keep your PICC line from getting wet ......... I'm sorry that I wasn't able to get the pictures that I wanted or the video that I wanted either.  I'm sorry that when you were taken out of the water to be dried off that you were handed to a nurse instead of handed to your mommy or daddy. I'm sorry that there were so many other things going on around us with all of the machines and tubes and wires and noises, that we didn't really get to enjoy the moment. I'm sorry that you have to be there baby boy.  I want you home with me so badly. :-(

I love you baby boy. Keep fighting!! <3

Remembering the Heart Angel's

So many things have happened since my last blog post, that I've been meaning and wanting to blog about.... and I know that I promised that I would be better at blogging.... but honestly.... I've just been too tired........ both physically and mentally.  I've been really saddened by all of the recent losses we have experienced in the CHD community. With Dylan's Norwood coming up really soon, it's gotten me really worried and scared, and sad.  I want to take the time to talk about and to remember two very special little Angels. There are a lot of families and stories that I follow within this new found heart community of mine in the last few months before Dylan was born, and a few that I had grown an attachment too, who have since then earned their angel wings.

One of them was precious little Travis DiCarlo.  Travis was especially special to me because he lived so close to me, he went to the same hospital as Dylan, he had the same Doctors, and the same Surgeon as Dylan.  I was hoping to meet little Travis one day, I actually wanted to meet Travis before Dylan was born, but me being put on bed rest for almost my whole pregnancy made that one impossible.  Travis had the most beautiful contagious smile, there was no way I could look at his pictures without smiling ( Still can't ). He was an amazing little boy, and such a strong fighter. Travis lost his battle with HLHS on February 19th, 2011. Joe and I just recently had the pleasure of meeting Travis' mom. We met for dinner at Islands, and I quickly realized where Travis had gotten all his strength.  I am quickly realizing how much strength it takes to be a mother, and how much more strength it takes to be a mother of a "heart baby"....... and the night I met Nicole, I realized how heartbreakingly strong you need to be as a grieving mother of an angel baby. You have no choice but to be strong, you have no choice but to try and move forward, you have no choice but to try and live when a piece of your heart is missing......... and that's probably the hardest part..... you have no choice. Nobody chooses to have a child who is "sick" ..... nobody chooses to lose their child. It's not fair.  Nicole didn't have to meet us, she didn't have to take time out of her grieving to show us support, but she did. Nicole wanted to meet us, to tell us that with everything they went through, and are continuing to go through, it was all worth it.  I needed to hear that.  I am so scared of losing Dylan all of the time, that sometimes I forget to just take it all in, to just enjoy the NOW and not focus on all of the what if's and the possible bad outcomes.  Nicole, I know that you don't think that you guys are strong, that you're just going on with your lives, because you have no other choice but too ......... but I want you to know how much your continued support of Dylan and my family means to me. Your willingness to still be a part of this heart community, and to continue to show support of the Heart warriors through your own grieving process, show's just how strong you really are. I cant express to you how much Travis and your family has touched my heart. You are an amazing woman, and I'm so glad that I got a chance to meet you! <3

Nicole, Joe, and I at Island's <3

Dylan wearing the jammies that Nicole bought for him <3

Sweet Little Travis <3

The other Heart Angel that was special to me is Baby Olivia.  I haven't had the chance to meet Olivia's mommy, as I have Travis', but I had followed Olivia from the beginning. Olivia always brought a smile to my face. Her mommy always dressed her in the cutest clothes and I would look forward to her posting them for everybody to see her cuteness. Katie and I never really talked, but I had always felt like I knew her. I'm not sure why, maybe it was all of the post's that she would post on FB and it sounding like things I would say, or ways that I would react in certain situations.... maybe it was the whole tattoo/piercing thing that we have in common :)  Olivia earned her Angel wings on April 24th.  I found out while I was at the hospital with Dylan. I checked FB on my phone to get an update on Olivia because Katie had posted that Olivia wasn't doing to well, and when I read that she was now and Angel, I just started crying........ and you better believe that I held onto my baby boy a little bit tighter.  Katie, I want you to know how much Olivia had touched my heart, I never had the chance to meet the little diva..... but she will always be in my heart and in my thoughts <3

Little Miss Diva Olivia <3

Those two very special angel's are sadly just two of the many that have lost their battles recently. It's sad to know that so many of these precious special little fighters lose their battles without anybody knowing about it. I knew nothing of this world until I was thrown into it. The reality of this CHD World is horrible. Congenital Heart Defects are the #1 cause of birth defect related deaths. Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for CHD. This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects. 4-8% born with CHD have Hypoplastic Left Heart Syndrome.  It is a proven fact that the earlier CHD is detected and treated, it is more likely the affected child will survive and have less long term health complications, which is why I vow to do what I can to help raise the awareness. We can't let our fighters, and our Angel Diva's and Warriors go unnoticed.  It's sad, but it's true that you don't really realize or know about things until it's happened to your family directly or to somebody that you know ......... but then by that time, it's too late. Even if your family is not directly affected by CHD, please help spread the awareness of it. That is the only way that CHD can get the recognition for the horrible thing that it is, and get the funding for the research that it needs. <3

For the first month and a half of Dylan's life, he was the only baby in the NICU with his specific heart defect (HLHS) until last week when he got a neighbor, Jaycen, who also has HLHS.  Jaycen's mommy and daddy didn't know about his heart until AFTER he was born, as terrifying and horrible as it was to find out about Dylan's heart before he was born, I can't imagine having to find out after he was born and being thrown into this CHD world without having any time to prepare.  Baby Jaycen had his first open heart surgery today, and his mommy say's he's doing well. Please keep Jaycen and his family in your thoughts and prayers.

I'll leave you with some pictures of my precious little baby boy who continues to fight for his life. Dylan is 1 kilo away from his goal weight, so his first Open Heart Surgery is on the horizon. Depending on the schedule, it looks like he'll be having his Norwood either next week or the week after that. Please keep him in your thoughts <3

He knows he's handsome!  He can't get enough of himself <3

:-)  This pretty much sums up how Dylan feels when anybody tries to take his wubbanub or change his diaper <3

ALWAYS has such a concerned/confused/grumpy old man face <3

I love you baby boy!! Mommy and Daddy are fighting right along side you! <3

3.5 Kilos and a possible Surgery Date??

So the good thing about having many different doctors, cardiologists, neonatologists,  and nurses looking over Dylan is that you get many different opinions and thoughts....... The bad thing is..... you get many different opinions and thoughts!!  Last week I posted that we had talked to one of his cardiologists and she had told us that they were not waiting for Dylan to get to 3.5 Kilos as he had been previously told..... Well ........ apparently we're back to we ARE waiting until he's 3.5 kilos.  When I was at the NICU visiting with Dylan on Friday, I saw Dr. El Said roaming around, she is the Cardiologist who suggested the Hybrid Norwood for Dylan, so I thought I would have one of the nurses page her for me so that I could ask her some questions and kinda get a feel for what they are thinking and how Dylan is doing..... While I was waiting for her to be paged, I saw Erin, who is a part of Dylan's Surgical Team, go into the room next to me......... so I thought  " Oh there's Erin... even better!"  So once she came out of the room I grabbed her and pinned her down for answers ( Not literally grabbed and pinned down ;-)  ........... and this is the gist of what she told me ....... we ARE waiting for Dylan to get to 3.5 kilos ....  She said that with the way that Dylan has been gaining weight, if he continues to gain he will be able to be at 3.5 in 21 days.... so they are gonna give him about 3 more weeks...... if he stops gaining weight, they will re-evaluate and probably add more calories into his feedings since he is only at 20 calories right now. I am not sure why the cardiologist we talked to last week told us that we are not waiting until he's 3.5 .........  I think it was because she probably did not know Dylan's specific case and was just speaking in general ......... Generally..... they don't wait until a baby is 3.5 kilos to do the norwood... generally a baby has their norwood in the first 5-7 days of life..... But in Dylan's case..... with Dylan's specific anatomy... it's BEST to wait until he's at least 3.5 kilos to give him a better chance at survival because he is considered even more higher risk than the general because of his "unfavorable anatomy".
  He will be getting weekly Chest X-Rays and blood work every Monday, and a Heart Echo every Wednesday, and Erin and Dr. El Said will meet every week to discuss how he's doing and how everything looks.   So as of right now, I guess it looks like he could possibly be having his Norwood in about 3-4 weeks time.  I of course have mixed emotions about it.  I WANT him to have it because I know that he needs it and that it's the only way that we're gonna be able to take him home..... but I DON'T want him to have it because I know that there is a high risk of us losing him.  I'm trying so hard to not think that way.... to just trust in how strong he's been so far, and to just think about how great it's going to be once we're past the Norwood and we're bringing him home, I'm trying so hard.  I can't even begin to explain the range of emotions I go through on a daily basis...... on a minute to minute basis...... I honestly don't know how I've made it this far .... but I guess if Dylan's still fighting......... so can I. :-)

If we look at the BIG picture ( which is what I'm trying to focus on )  Dylan is doing really good, and making really good progress. He is able to breathe on this own and doesn't have to intubated.  He's not on Nitrogen or Oxygen anymore.  He's on a relatively low dose of the PGE.  He's not suffering from Apnea anymore, He's gaining weight pretty quickly, and there hasn't been any major complications.  He's fighting... and he's showing us how strong he is.  I just have to have faith in him........ that he'll be able to make it through his next operation and to come home where he belongs.  He's mommy's little hero, and he's teaching me what it really means to be strong and to be a fighter. <3

To my precious little boy .....

* You LOVE to be held
* You LOVE your Wubbanub that your cousin Mandy got you
* You LOVE the music player that your Grammy got for your crib ... especially the Twinkle Twinkle Little Star song <3
* You LOVE to be swaddled ... and you love to show us how strong your lungs are when you are not.
* You like to have your head and your temples rubbed when you're trying to fall asleep.
* Some of your nurses even call you peanut, and a few of them are disappointed if they don't get assigned to you during the day.... they still come and check on you.
* Your toes are very ticklish ..... just like your daddy's <3
* You have your daddy's ears.... the same exact ears...just a smaller version of course....  it's cute :-)
* Your mommy and daddy love you SOOOO much, and we will ALWAYS be here for you!

Your Music Player your Grammy bought for you

You and your Wubbanub that you love so much! <3

Peanut's first Photo Shoot

 So just a quick update on the results from his last few Echo's.  Dylan had an Echo on Wednesday that showed that his PDA was looking a little restricted, so they upped his PGE a little bit and re-did the Echo on Thursday, so Joe and I sat down with the social worker and one of the cardiologists who has been following Dylan ( who happens to also be my nephew's cardiologist) to find out what the plan was because one of the Neonatologists had mentioned to me that she was told surgery might have to be sooner rather than later.  It was good that we sat down with the cardiologist, because we got a few things cleared up.  First thing we got cleared up is that they are not waiting until Dylan is 3.5 Kilos to have surgery........ in fact, when I mentioned that we were told that they wanted him to be at least 3-3.5 kilos before surgery, she kinda just laughed in our face, and told us that it would take months to get Dylan to 3.5 kilos. She said that they don't have a set weight or set time in mind for Dylan's Norwood......... that they at least want 10 days to go by where they are not having to deal with any other issues, such as the issues Dylan was having with his stomach last week, or the eye infection that he got........  they  don't want his body fighting any other issues on top of having to recover for surgery..... they keep saying " Dylan will tell us when he's ready" ...... what that means exactly.... I'm still unsure.  They said if he can go 10 days without having any other issues and is still gaining weight, they will let him keep gaining weight....... but if hes gone at least 10 days without any other issues and hes not really gaining weight, or hes just kinda slowing down, then they would go ahead and do surgery......... The cardiac team meets every Thursday to talk about all of the cardiac patients and to go over plans of each baby, so it's kind of on a week to week basis right now........ which kind of sucks...... before when I thought that they wanted him to be at least 3.5 kilo's before surgery,  I kind of had a time frame in mind that we were looking at...... and now...... I have NO clue.   Dylan's next surgery could be next week..... or the week after that.  Not knowing when his next surgery is going to be is killing me.... I know that he needs it..... but I'm so scared for him to have it......... because right now, I have him here..... I can hold him in my arms every day..... he looks into my eyes and melts my heart every day ........ and I don't know if I'll have him after surgery..... the unknown SUCKS!!!!!!!!!!!!!!!   But I'm trying to just take every day in and enjoy the moments I have with him and to make sure that he knows that his mommy and daddy love him so so much!    He has another Echo in the morning, so I guess we'll see what that one says.

On a BRIGHTER note .......  Dylan is being weened off of his oxygen.... he is now down to 1 liter ..... as soon as he gets off it, he'll be able to take the stupid nose canula out :)

We are also allowed to bring in clothes for him now :-)    I was hesitant to bring in clothes for him because he loves to be swaddled SO much.... I mean so much, as in,  the minute you start to unwrap him, he screams bloody murder.....  so I was afraid that he would get too warm with clothes on, on top of being swaddled..... but I figured I would try and dress him anyway, and see if he would tolerate being clothed without being swaddled.......... sometimes he does.... sometimes he doesn't..... but at least I've gotten some cute pictures of him with some clothes on :)

Poppo came to see him today and brought his camera .........  and for those of you who know me and my family....  we usually always have a camera on us..... either our SLR big Camera's or at least the little one I carry in my purse......   My dad's a photographer and so am I,  so Dylan better get used to saying "cheese" and trying to keep his eyes open through the flash :)  Here are some pictures from his "Photo Shoot" today <3

 

and here are some of little peanut in his big boy clothes <3

Dylan is a month old!

Ok, Ok ..... I know as you read this, you're probably thinking " FINALLY!" ...   I'm sorry.  I'm not normally this sucky at blogging.  But I REALLY am going to try and be better about it, because SO much happens in such a short amount of time, and I know that if I'm not blogging it, when it goes come time to blog and update everybody,  I won't be able to remember everything that's happened or when it happened. 

A lot has happened since my last post.  I won't go into everything, I'll just give the highlights and catch you up to speed on where we're at now.

On my last post I had said that Dylan was having problems with Apnea episodes because of the amount of PGE ( the drug that keeps his PDA duct open, so that he's able to live and breath until they do his Norwood surgery) he was on.  I have a love/hate relationship with PGE ........ I love it because it's what's keeping my sweet, precious baby boy alive right now........ and I HATE it because it is what caused me to witness the scariest thing in my life.  I think it was the day after Dylan's surgery, or it might have been the day after that, but Joe and I went to go see our peanut at 8pm after the NICU re-opened after shift change, and the minute we got to his bedside, he had an Apnea episode. As we were walking down the hall into his room, I saw his nurse at his bedside kinda rubbing his head, and as we got up to his bedside Dylan started turning blue...... a deep midnight blue color that I NEVER want to see again.  His whole body was stiff and his nurse was flicking his feet really hard and rubbing his head and patting his back to try and get him to breath. Nothing was working, so another nurse came to the bedside and started to "bag" him.  I stood there in horror looking at my baby boy thinking that was the last time I was ever going to see him alive.  I stood there watching everybody at his bedside working on him and there was NOTHING I could do.  It seemed like hours that I was standing there crying, watching my boy fight for his life.  He finally started breathing again and I was able to stand at his beside and hold his hand.......... only to have him stop breathing again two minutes later and to have his little hand turn blue inside of mine..... after that, they had to put him on something called a CPAP machine to help him breath...... the way it works is it goes through his nose, and in order for it to work, his mouth has to be shut so that the air doesn't just go through his nose and out his mouth..... Dylan likes to have his mouth open a alot...... so they had to put a chin strap around his head to keep his mouth shut.  It was such a horrible thing to see your child go through and it was so hard seeing him on the CPAP because he looked SO miserable :(

Since those scary Apnea episodes, they lowered his PGE down to the "safest level" that they could that would still allow it to keep his PDA open, and he stopped having Apnea. YaY!  He's been really good,  he hasn't had any apnea at all in at least close to 2 or 3 weeks.  As a matter of fact, he's been doing really good in general since then, with a couple of minor hiccups in the road.  He was doing really good with his feedings, and gaining weight, but was set back a few days because he started having blood in his stools. We could tell a few days before they said that he had a stomach problem that he wasn't feeling good.  I could see it in his eyes... I could tell he wasn't feeling good,  and then he started having the bloody diapers, and he stopped eating and wouldn't open his eyes for anything.... just wanted to sleep.  They did a series of abdominal x-rays and blood work, and everything came back "normal" .......... they couldn't figure out why he was having blood in his stools, so they took his food away from him and put him on bowel rest.... and let me tell ya... our baby boy likes his food!!  He was NOT a happy camper when they took it away from him :-(   After a few days he was able to be back on food, but this time he has a different formula that supposed to be gentler on his tummy..... and so far, so good...... no more bloody stools :-)   It set him back a little bit on his weight gain...... but he's pluggin along now, and getting back to gaining.

He is now off of his Nitrogen, and they are going to start weening him off of his oxygen.  Yay!!  Once he's off the oxygen, we'll be able to take his nasal canula's away, and we'll be able to see and kiss his whole face!!  <3

All of his grandparents were FINALLY able to meet him!!  Because of flu season, the NICU where he is at had a two person visitor policy...... Joe and myself, and then two other people...... now you would think that isn't bad right?  Two people at a time right?  Wrong........ Two people... period.  Thats it......... we had to pick two people and ONLY those two people were allowed in to see him.... there was no switching or trading allowed...... once we wrote those two names down, it was set, they couldn't be changed.... so for the first 3 weeks of his life, only the Grandma's were allowed to see him.  It really sucked....... we really wanted everybody to be able to see him, to meet him and I didn't think that was going to happen..... until we were informed last week that now that flu season is over, we are now allowed to have SIX people on the list..... so both the Grandpa's and my sister were able to come in and meet Dylan!  It was so great to have the rest of our family be able to see him. <3

We had to fire a few nurses........ there has been PLENTY that I have not really cared for...... but could tolerate, because I know that we can't fire every single nurse that I didn't really care for... BUT ..... there has been two nurses that Joe and I just did NOT want anywhere near our son...... and they had to be fired :-)

We left the Ronald McDonald House this week.  We came home on Monday night.  It was time to come home. Time to TRY and get into some routine and have some "normalcy" in our lives.  Part of me was ready to come home, and another part was not.  I knew it was going to be hard for me to come home.  Although I've had to be without Dylan since the day he was born, I still had still been at the hospital and had not come home since the day he was born.... I was right across the street from him the whole time and I could go see him any time I wanted........ So it was really hard going home without him.... coming home to all of his baby stuff and all of his clothes hanging in my closet waiting for him was a really hard and emotional thing for me.  All I want is to be at home with my baby boy in my arms. :-(

So that about puts us up to speed on whats happened since my last post.  Yesterday he had an Echo on his heart done, and they thought that his PDA looked smaller than what it has been, so they upped his PGE medicine to see if they could open it a little more and they did a repeat Echo this morning.  The results from the Echo are not what I wanted to hear.  It does show that his PDA was restricted yesterday, and it had opened a little with the increase of his PGE that they did yesterday so they didn't have to increase it anymore today.  The neonatologist told me that the cardiac team was going to meet tonight and discuss a plan and what they want to do with Dylan, but that she was told that surgery might have to be sooner rather than later.  She said that she doesn't have a date or anything yet, but that the Cardiac team was meeting tonight to discuss things, and then they would inform the Neonatal team of their plan in the morning when they do rounds.  So we'll know more tomorrow about what the plan is.  I really hope they tell us that they can give Dylan more time to grow.  He isn't ready for his Norwood yet.  He is just barely back up to his birth weight which really isn't that much :-(     He's such a strong boy, and he's been doing so good, and I am so so proud of him.  I know he'll fight just as hard if they have to do his surgery soon, but I'm really hoping he has more time.  <3

Here is one of my favorite pictures of Dylan and his wubbanub <3