Monday, January 30, 2012

Prayer Request

My friend, Melissa's little boy, Jack is having his amputation surgery tomorrow. Prayers are appreciated for little Jack and his family! I know how much we felt every prayer said on our behalf and the peace and comfort they brought us and I hope Melissa and her family feel the same. Thank you so much!

Thursday, January 26, 2012

2 Week Post Op Checkup - DRAMA

***WARNING: THERE ARE SOME PICTURES OF DYLAN'S STUMP AT THE END OF THIS POST. THEY AREN'T TOO GRAPHIC, BUT THEY ARE A LITTLE BLOODY AND RAW/HEALING STUMP LOOKING. FEEL FREE TO READ THE STORY AND THEN STOP SCROLLING IF YOU DON'T WANT TO SEE THE PICTURES.***

Yesterday was Dylan's 2 week post op checkup and it was quite comical...in a "I can't believe that happened" kind of way. Thinking about it this morning I smile, and shudder. Let's just say, yesterday's checkup did not go as we had planned. But I'm kind of glad it went down the way it did.

So we went into yesterdays checkup with the knowledge that there was a small possibility that they would change his cast, which would mean that we would see his stump for the first time. We were nervous about that. All of our fellow FH friends who have already been through this have said that it's hard to see the stump for the first time. And it's understandable. When the cast is on, it's almost like you don't accept reality that the foot is, indeed, gone. So seeing the stump for the first time makes it all very real. We were kind of preparing ourselves for it, but at the same time they said that they would probably leave the cast on. They would only change it if it needed to be changed. Anyway, so we didn't want to get too worked up about it prior to knowing for sure if we would actually be seeing it.

So we gave him some pain meds prior to the appointment like we were told to (just in case they did need to do something with the cast, he'd be more comfortable). We headed in. We were brought to our patient room and we waited. Dylan was being super cute and we were having fun playing and singing songs with him while we waited for the doctor. Our nurse, Molly, came in to see how we were doing. She has called a few times within the past two weeks to check on us and Dylan and she knew of our struggles at night and has been trying to help us figure that issue out. So she wanted to talk to us about that. We chatted about the night issue and she gave us some advice. She said they would be doing the x-ray with the cast on and then asked if we had any other issues we wanted to address at that appointment. I pointed out that his cast was quite loose (his leg was swollen right after surgery and so now that the swelling has gone down, his cast has become pretty roomy). She checked it and agreed that it was loose and said she would go grab the lady who does the casts to see if she thought they should recast it after x-rays.

She walked out. Literally 30 seconds later, Bryson was holding Dylan and had pulled him up to tickle his belly with his mouth. Dylan was laughing and kicking his legs and THUNK...his cast falls off his leg and lands on the ground. I jumped up and shrieked, "HIS CAST FELL OFF!!!" Bryson looked down and we both stared at his cast and his stump for like 2 seconds with mouths and eyes wide open in shock. I honestly couldn't look at his stump too much, I'd glance at it quickly and then look away, over and over. It was bloody and so raw looking. But there it was...ready or not, we were seeing it! (By the way...when they warned us at the hospital right after surgery that there was a possibility of the cast coming off, they said the dressing would stay on so we wouldn't see raw stump...wrong!) I shot out the door and said I'd go find Molly. I frantically started looking for Molly. It was taking everything in me to not just scream out "MOLLY!!?!?! WHERE ARE YOU!????". :) I was freaking out a bit. I finally found her in the nurses station room, stuck my head in the door and said, "HIS CAST JUST FELL OFF!!!!" She looked at me shocked and said, "WHAT?" We ran to the room.

The cast lady had just barely walked in and we all stood there nervously laughing about what just happened. Molly was so sweet making sure we were emotionally okay. At this point his pants were on and covering his stump. We carefully took his pants off so they could check his stump out, plus they would need to be off for x-rays. Dylan looked down at his stump once we took his pants off and started crying. That was heartbreaking. He just stared at it for awhile and then softly started to touch it. He clearly understands something happened there. :( They checked his stump and said it looked good and then put some gauze on it to keep it protected until they could recast it. I was nervous about his broken bone...should he be moving his leg? What if he hit his leg on something before they could recast it? We were being super extra cautious trying to keep him from hitting anything. They said it would be fine and that he could move it and be just fine, as long as he didn't whack it too hard. He LOVED being able to move his leg. He kept straightening it and bending it and rubbing it on things. He loved the freedom to move it how he pleased.

We got x-rays done. He was pretty cooperative. It was still nerve wracking trying to get his leg positioned right for pictures, but being scared to forcefully move it too much or touch it too much. After x-rays we went back to our patient room and Dr. E and his PA came in with Molly shortly after. They took the gauze off and checked out his incision. They said it looked really good. That was when I first really looked at his stump. It was hard to see. Partly because it looked so raw and bloody and painful and also because it's the first realization that his foot really is gone. :( But at the same time, seeing his stump to me was seeing what would make it possible for him to walk with a prosthesis. So that made it a little easier. They said the x-rays look good. His tibia is pretty much completely healed and is healing really well. They said they wanted to keep him in a cast for another 4 weeks. They said that was probably overkill, but they would rather have him casted a week too long than a day too short. This will give his tibia a chance to heal 100% and also give his heel bone (which is at the end of his stump for weight bearing) a chance to connect to the end of his tibia really well. The only small issue was the pin that they have in there (through his tibia and out his stump) was pushed a little far up into the bottom of his stump. So they had to pull it out a little bit and put a piece of felt between the anchor of the pin sticking out of his stump and the bottom of his stump. It wasn't that big of a deal, but they said that was probably uncomfortable for him. Poor guy.

Dylan did awesome. He let them mess with his leg without putting up a fight. And then when it was time to recast it, he laid still and let them recast it. It was so nice and peaceful, which I think helped the whole situation as well. It wasn't too traumatic with him screaming and fighting or anything. He was okay with it all, so we were too. I'm glad this whole "stump reveal" happened the way it did. There was no chance for us to really build up any anxiety over seeing his stump, like there would have been if they were slowly removing his cast and undoing the dressing. It was just there....like it or not, ready or not...STUMP. I'm just glad his cast fell off at the doctors office and not at home. Considering how much I was freaking out at the doctors, I can only imagine if that had happened at home, I would be a complete mess. Now I feel much more prepared. So if it happens again, which there is definitely a chance that it will in the next 4 weeks, I feel like I will be able to handle it with much less stress (less stress...not no stress. ha!)

So in 4 weeks at his next appointment, he will be getting his cast taken off for good. The prosthetist will be there to do his first fitting for his prosthesis. Then within a few weeks after that he will be doing a final fitting and then receive his first leg! My guess is that by mid-March/end of March he will have his first leg. And then begins the journey of getting him used to his leg and able to use it. We're excited!

And now for the pictures...STOP READING NOW IF YOU CAN'T (OR DON'T WANT TO) HANDLE A LITTLE BLOOD...AND A MISSING FOOT. :)
*
*
*
*
*
*
*
*
*
*
*
*
*
*
*
*
{Video from shortly after his cast fell off. We were still in shock! This is after Molly had checked it and she was out of the room getting some gauze to wrap it up before the x-rays}
video

{After getting x-rays, waiting to make sure the ones we got were good enough. Don't you LOVE Bryson's mauve x-ray vest. hee hee}


{One of his x-rays. You can see the pin. It looks like it's way up in his stump, but it's not. It is, indeed, poking out of the bottom of the stump. You just can't tell in this angle. You can see where the tibia was broken and you can see the cloudy white matter around that site. That is indicative of bone healing around the osteotomy sites.}

{Checking out his stump after x-rays. They had just taken the temporary gauze off. The yellow thing attached to the incision in the first picture is part of the original dressing. They hadn't peeled all of it off yet. Also, the incision on his shin is where they went in to sever his tibia to straighten it. I have to trust the doctors when they say it all looks good...cause it looks so bad to me still. :) I love the picture of Dylan holding his leg up so he can get a closer look. He was very interested in everything.}
 

{Recasting. He did SO good and just laid there quietly. Such a trooper!}
 

{There's a leg in my purse!! We got to keep his old cast so we could show Kaden and it just looked so funny to me sticking out of my purse. :) }

{His new green cast. It's smaller than the first one since his swelling has gone down and he doesn't need quite as much cushion around his leg now. We can probably even get normal pants and jammies on him instead of only stretchy sweats!}

{Is he not the most beautiful little boy!?! Okay, I'm biased, but I think he's pretty handsome!}

Friday, January 20, 2012

One Week Later

Still working on the detailed surgery day/hospital stay post. Someday...when I'm not so tired. :) Today I caught a glimpse of myself in a mirror as I walked past it and I literally had to do a double take. I know I FEEL like the walking dead...I didn't realize I LOOKED like it too. haha.

Yesterday marked one week home from the hospital and we are amazed with the progress Dylan has/is making! He's crawling all over the place (has been since the day we got home, just one day after surgery), he's climbing whatever he can manage to climb, he's standing (which was hard for him to figure out, but he did it!) and is now working on trying to cruise around furniture. He wants to walk so bad. He LOVED to walk prior to surgery and I think it's kind of driving him crazy that he can't walk right now, but he'll figure it out. In due time, I KNOW he will. He's always figured things out and made them work and I know he'll figure this out too. I tried holding his hands the other day to help him walk like he used to and he just didn't know what to do with his casted leg. He started crying. It was really sad. BUT...for the most part...he is doing awesome! Nights are still a struggle. He tosses and turns and whimpers and cries all night long. It makes for a very sad boy and a very tired mommy! However, during the day, he is pretty much back to his normal cute self.

He's mastered:

Crawling...

Climbing...

Standing... 

Chilling...

And just being too darn cute...

He's kind of superman. :)

It's pretty exhausting being so awesome.

Sunday, January 15, 2012

Quick Update

I was hoping to blog all about surgery and the past few days, but I just don't have the energy to do it right now. However, I've had a lot of people asking for an update, so I thought I would at least blog a quick update for everyone.

Surgery went forth as planned on Wednesday, January 11th at 7:30 AM and was done around 10 AM. I'll blog more details about the whole day later, but the surgery went great. The doctors were extremely pleased with how it all turned out. 

It was a rough 24 hours after surgery. Emotionally and physically exhausting. But we survived. :) It was hard to see our baby so uncomfortable and in pain. He cried for about 10 hours straight right after surgery, with little 5 minute cat naps here and there, and a few moments here and there where he was awake and not crying. It took awhile to get the whole medicine combination down...trying to figure out what medicines were working or what else we could try to help him be comfortable enough to relax, etc. By about 12 midnight we were finally able to get him to relax enough to sleep more than 5 minutes at a time, but he was still up frequently throughout the night.

Thursday morning around 6 AM he was starting to have more awake and not crying time, as opposed to awake and super fussy or trying to sleep and super fussy time. The medicines we were using seemed to be working. He was eating and drinking and was having good wet diapers, so around 10 AM they told us we would be going home that afternoon.

We were excited to be in our own home and figured Dylan would be happier there. He hated the IV and all the cords attached to him. Plus the beeping of the machines and the outside noise of the hospital and the nurses coming in every so often to check stats, etc. We felt like he couldn't really get good sleep there (or us) and knew if he could get some GOOD sleep he might be a little happier.

So around noon on Thursday we were discharged and were on our way. Dylan was still fussy on and off, obviously uncomfortable, but for the most part we were pretty impressed with how well he was doing just 24 hours after surgery.

{Here is Dylan right after getting home from the hospital. His poor groggy/drugged/tired eyes.}

{The night we got home from the hospital, trying to play}

Being home has been nice. We were able to get back into a somewhat normal routine, which has helped. He is still definitely uncomfortable at times, which is SO sad to see. I think the hardest thing is seeing him get so frustrated not being able to do the things he used to be able to do. However, he is figuring things out so fast! The first day he was frustrated he couldn't crawl. He kept trying and trying (yes, this was the day after surgery...trying to crawl already!) and by that night he could do it. He is now crawling all over the place with very little extra effort. He had a hard time figuring out how to roll over again with the heavy cast in the way, etc...but has been able to figure that out. He's had to figure out how to sit up again and is working on standing, but that's still a big frustration for him. It really is amazing how quickly he wanted to just jump back into normal life. It's hard to see him frustrated and SO hard to see him in pain or uncomfortable, but he has been a champ overall through this whole thing. He's not 100% his normal self yet (his cute smiles are somewhat rare still) but we're getting there. He's proving to be the little warrior that we knew he was from the day he was born. We look forward to him continuing to become more and more like himself.

{Saturday, after a much needed sponge bath and hair wash. Keeping entertained with our spices.}


I know I've said this before, but I honestly cannot thank you all enough for the prayers and thoughts and well wishes throughout this whole process. To family, friends, friends of friends, and complete strangers...THANK YOU! I can't explain the peace my husband and I felt the day before surgery and the day of surgery. We KNOW it is because of the MANY prayers said on our behalf. We felt Heavenly Father there with us, carrying us through that day, and we felt peace. That's the best way we can describe it...peace. Even though it was hard, both emotionally and physically, overall we were really able to handle those days leading up to it and the day of, much better than we thought we would've been able to. So thank you!

Also, I can't describe how overwhelmed we have felt because of all of your willingness to help us, not only through prayer and emotional support, but through financial contributions as well. You all have been an answer to prayers that we have been saying since the day Dylan was born and the day we realized this would be somewhat of a financial burden for the rest of Dylan's life. We always knew we would figure out a way to make the money aspect of this situation work out and continued to pray for that way. YOU were, in part, that way. We had no idea my friend Ashley (at Make It and Love It) was going to do what she did. And we were BLOWN AWAY by how many people so willingly either donated money directly or bought patterns to go towards money raised by Ashley. We have received the money raised by the pattern sales and that combined with donations made directly to the fund made for Dylan will cover our portion of Dylan's surgery and his first prosthetic leg. We are in shock! It makes me tear up thinking about the sacrifices you all made for us. You have no idea how helpful this is for us. You gave us a leg up (no pun intended) with all of these medical bills. Thank you, thank you, THANK YOU!!

I promise I will blog a more detailed post about surgery with lots of pictures and what not, for those that care to hear all about it. And I will most definitely be keeping everyone updated on his progress.

Tuesday, January 10, 2012

His Foot

I know I should probably be finishing packing our bags for the hospital or getting some sleep (like that is going to happen) or sitting on the couch crying (wait...already did that). But honestly, I just need to not dwell on what is happening tomorrow for just a bit.

I thought I'd share the casts that we made of Dylan's foot. The first one we did last night is on the left down below, not the best, but we were okay with it considering it took four frantic adults trying to keep a VERY wiggly 1 year old still enough for at least 1.5 minutes. It was kind of hilarious. So we were okay with the not quite so perfect outcome. Figured it was good enough.

Some pictures we were able to take last night prior to frantically asking my dad and mom for help. It looks much more peaceful than it actually was. haha.

We had two more kits so we figured today we would try it again...why not? It went quite a bit better. My mom and I loudly sang "If You're Happy & You Know It" over and over and over again and it KIND OF helped. It helped enough that we were able to get a really great mold the second time around (the one on the right down below).

Not bad...the pictures don't show the detail on the one on the right too great. You can see his toenails and wrinkles...it's so sweet. We made a cast of his right foot tonight (it's still setting) with the last kit we had, so we can have one full set of his feet at the time of surgery. They are exactly what his little foot looks like, all crooked and big toe taking a right turn and all...we LOVE it! We will definitely treasure these.

We have these two little feet sitting on our mantle drying and my dad said, "Aw, poor guy will never dance...he has two left feet." hahaha. :)

Today I have been trying to tickle and kiss and love on this little foot as much as possible. I'm going to miss it. I'm so not ready to say goodbye to his foot, but I don't think I ever will be. I've been trying to dwell on not what will be lost, but what will be gained in return. This surgery will open doors of a whole new life for Dylan. We can't be sad about that.

Tonight my husband gave Dylan the most beautiful blessing. It brought me so much peace. I'm so grateful to be married to such an amazing man. He's been my rock, especially as of late. Love him!

Well, so much for trying to take my mind off of the whole situation. :) Back to packing and trying to relax and sleep (and probably a few more tears). :)

Feeling Heavenly Fathers love for us and for Dylan tonight and I know He will carry us through tomorrow and the next few days. What a gift that is. So grateful for my knowledge of Him.

Thank you for all the calls and messages...we love you all and appreciate each of you!

Monday, January 9, 2012

Speechless

I honestly don't even know where to start...I guess THANK YOU!

Prior to this morning, I was already feeling so overwhelmed and appreciative of all the emails and messages on Facebook from friends and family and friends of friends, etc., letting us know that they were fasting for us and praying for us and keeping us and Dylan in their thoughts. And how their churches were praying for us and how they had passed our story on to friends who were all praying for us. It was truly touching. Thank you to each of you!

This morning I woke up to an email from my very dear friend, Ashley from Make It and Love It, telling me that she had posted a blog post on her website about Dylan and she hoped I didn't mind. :) It made me cry...in a good way. I was so touched. She's an amazing friend. And then I saw the plethora of comments on this blog and Ashley's blog and personal emails from strangers from all over the world (literally), letting me know that they are praying for Dylan and for our whole family and I was/am COMPLETELY SPEECHLESS.

The comments and messages have continued throughout the whole day and each one has brought tears to my eyes. They are not tears of stress or feeling overwhelmed with what is to come (which has been pretty common this week)...they are tears of love. I can't even express in words how much each and every prayer and message means to me and my family. We are overwhelmed with gratitude to EVERYONE who has offered prayers or well wishes on our behalf.

Today I felt such peace...and I have so many to thank for that! From every corner of my heart and soul....THANK YOU! Thank you for taking a moment out of your day to serve our family through prayer or thoughts or messages. It means more than anyone could know.


As a quick update...Dylan is doing better, although he still has a lingering cough. We are still hopeful that this will be gone by Wednesday morning and we will be able to go forward with surgery, as planned. We do believe in miracles and with as many people that are praying for Dylan right now...now would be the time that a miracle would happen. However, we also know that if for whatever reason he is not well enough for them to be able to perform surgery, we know it is for a reason and the best thing and we will move forward when we can.

Tonight we made a mold of Dylan's foot. It's still setting, so we'll see how it turned out in an hour or so. It was not an easy task with such an active one year old. haha. It took four adults and even then...I'll be surprised if it looks as good as I'm hoping. Good thing we bought three kits, so we still have two more tries if this one doesn't turn out. haha. I'll post pictures tomorrow of our results. :)

Also, on the list of things to do before surgery, my sweet friend, Ashley (different from Make It and Love It Ashley), took some pictures of Dylan's little leg and foot. We wanted some special pictures for remembrance sake and she did such a BEAUTIFUL job. They took my breath away when I first saw them and brought tears to my eyes. Here are some of her favorites that I stole off Facebook (hence why the quality may not be the best). I can't wait to see the rest. Thank you, Ashley!

And just in case anybody was wondering why there are no pictures of my husband and Dylan...I was never planning on being in the pictures either, it just kind of happened while I was helping pose him and then we just kind of went with it. I'm glad, because I love them and will treasure them. I just wish Bryson could have come and had some taken too. :(