Sunday, October 17, 2010

Day +113

Alright, so for starters, thank you for all for your comments from our last post! Some of them were very insightful. I even got some, lets just say, less than nice, emails from some of you. I think I offended some of you with my thoughts on baby sign for Daylon. For the record, this blog is about Daylon and our family. I have never wanted to use this blog as my soapbox or try to convert the world to my way of thinking. I'm using it to update all of our friends and family on our lives 1600 miles from home and the goings of his BMT and life with EB. That's it. I never meant to offend or pass judgement on anyone.  I think that whatever decision you make in raising for your kids is right for your family, because you have their best interest in mind.  As far as our decision, Daylon is not a typical baby. Maybe I haven't painted a clear picture, but the damage done to his brain is not small. It's his entire left side. Some of the therapists did want to start him on baby sign, but the reason is because they don't believe he'll ever talk again (keep in mind they're not doctors. They just looked at his MRI, saw the damage, and came to their conclusion). We were not ready to come to grips with that and just throw in the towel. What we have learned from the Neurologists is that when a child's mind is working on one area an excessive amount, then other areas can lack in progress. Daylon is in Physical therapy 3 times a week and Occupational therapy 2 times a week and just reteaching him to do things like hold up his head and sit is taking a large amount of brain power. We need to make sure that he is verbally stimulated and if we start adding signing to the mix, he'll likely pick that up instead of talking since he's already working so hard at physical movement. Not to mention he'll really have to focus on the physical aspect of talking since he struggles to get his right arm to move and can't control his right hand at all. The more time that passes from his stroke, the harder it is for his brain to rewire itself. At times I feel like I'm in a rush against time to reintroduce him to simple surroundings and tasks, if he's ever going to get a fair chance at life. I can not express the amount of guilt I have that he sits for 20 hours a week drugged through dialysis. Sorry, tangent. The point is, verbalizing his thoughts stimulates his brain and help to repair the damage done. On the 28th he'll be reevaluated since it will be 2 months that he's been coherent. At that time the doctors can get a better idea of what is going on with him long term. If they feel that he will never be able to speak or that his speech will be limited, then we'll start teaching him American Sign Language. Ok, so I'm done. =)
Daylon napping on Mommy's and Daddy's bed

 So onto the last 24 hours...
 Daylon had dialysis at 7:30 (I know, even on a Saturday! Yuck!) and Brian being the wonderful husband he is :) took him so I could stay home with our kids (including our Birthday Boy! Caleb turned 4!!). They took off 600 grams and his labs showed that his Creatinine and BUN are about the same. Hey! At least they stopped going up! :)
  After dialysis Daylon was a bit fussy and dry. I gave him 2 ounces of this organic baby smoothie we found at Target, turned off his feeds and let his tummy vent. It wasn't so much that I wanted him to digest it as I wanted to moisten up his mouth. Thankfully, he didn't throw it up!! This is HUGE folks! He known for puking after getting his meds down his J-TUBE ! Yay, Daylon!  I hoping, hoping, hoping that maybe we can keep his mouth's and tummy's blisters under control with the extra fluid throughout the day. We've tried in the past and he just ends up throwing up which is torture for his throat and mouth.

 Today Daylon slept until 2pm (SHOCKER!) which was perfect because Brian and I (and our four big helpers) were able to straighten up the house, get everyone ready for church and go over the kids line for the primary presentation one last time and send them out the door, all while Daylon slept. Made my life easy! I was a bit bummed to miss the kids presentation (In our church, all the kids in the congregation put on a presentation with a theme, songs, and little lines each kid gets to say in front of everyone), especially because it's Caleb's first Primary presentation and our kids have quite a few lines this year since there aren't a ton of kids in our ward (think congregation) up here. Oh well. Next year. :) Anyway, Brian said they did great! We're so proud of them!
  Daylon is smiling tons right now, so I'm off to enjoy them while they're free for the taking! As always, thank you all for your prayers for Daylon! Sweet dreams!
In our family it's a tradition to start off your birthday with a candle in your favorite donut. As you can tell, Caleb LOVES this tradition!
His cake was made by Keira and she did such a great job! She was so excited to surprise her brother! You might notice a few pot hole size marks on the cake...yeah, you can thank Violet for that. :)



I am SORRY to hear you have gotten some negative emails from others! You have enough on your plate!! You dont have time to deal with that!! B00!

At the end of the day.. YOUR the PARENTS... YOU decide whats best for your child!!

I bet the 28th cant come soon enough for you for Daylon to get evaluated!! I wouldnt throw in the towel either. Daylon has even proven Doctors wrong..... so lets prove the therapists wrong too :) The pics look like he is having fun with his Daddy !! He look so peaceful sleeping on your bed!

Wow your Primary Presentation is early our isnt till the end of November. I am sure your kids did great! Glad Daylon was smiling at you a lot today.
Happy-Happy Birthday to Caleb!!! I love your tradition with the donut!! That is a great idea... and any kid would be thrilled to start out the day like that! What a FUN thing to look forward to! You can see the dent in the cake pretty good..... oh that is too funny. Violet couldnt help herself :)

The McLaughlins said...

I am so sorry that you had to get negative comments from people. You are absolutely right, you are the one who knows your child, and you are the one to make the decision whether or not sign language will be right for him. The way you explain it tonight it makes so much sense why you would be against sign language for Daylon. It's more important that he focus on his actual speech. We want Daylon talking again!! :0)

The pictures of Daylon and Brian are PRICELESS! Oh my goodness they just melt my heart. I love seeing pictures of Daylon being so happy and laughing. He is just thriving. Too bad he has to have dialysis so much though. I bet that is hard seeing him afterward be so worn out.

Happy Birthday Caleb!! What a big boy you are now. I love the birthday cake. You can definitely see that Violet had some fun with it though. LOL

Jen and Brian, your kids are so lucky to have you for parents. Never have I ever felt differently. You are so good about making sure that each and every one of them feels loved and appreciated. And just look what you have done for have given him a 2nd chance at life. You are AMAZING!

Lots of Love,
Amber McLaughlin, CA

Annalien said...

You have the cutest kids! And I just love Daylon in the pictures with his dad. I am praying that Daylon will continue to improve - he is such an amazing little fighter.

Anonymous said...

Congratulations for your birthday-boy!
Praying for Daylon to keep on improving, speaking, eating, moving. You are in such a complex situation, that nobody can take better decisins than you for Him. It is a miracle for me how you cope to care for 4 healthy running around children and a post-transplant baby. You are doing a great job!


Anonymous said...

You have to make the choices that feel right for your child. Don't let other people's opinions make you feel bad. You're entitled to your opinion, them to theirs, and all is well!

And never give up hope of a full recovery. If my friend's parents had listened to what the doctors told them, their son wouldn't be alive. They were told his head injury was so bad he would either spend his life as a vegetable or die of brain death. In other words, the doctors were trying to convince his parents that there was little point to life support. When he didn't die and emerged from the coma, the prognosis was changed to "he will never walk or talk again. He will have severe disabilities and require life long care. Start looking for nursing facilities.

Today, my friend lives a happy and full adult life. He is fully independent and will soon be getting married. He does have some effects of his head injury, but nothing that prevents him from doing all the things he was able to do before the injury! Keep the faith :) recover so well!

Anne Dye said...

Daylon can do this! Trust your heart, you guys as his parents know better than anyone else! He is gonna prove 'em all wrong!! God has just not finished the miracle of Daylon, yet!
I wish there was a function to block out all the negative comments and emails!
Go Daylon!

Patrice said...

hahaha! I knew as soon as you expressed that opinion, the Crazies would come out. Believe me, I know. :) I mean, come on, how DARE you think YOU know what's best for YOUR son???!!! And honestly, don't you know that EB and BMT are the easiest things ever and don't complicate matters and make YOUR child have a unique set of circumstances? Come on, it's SO SIMPLE and straight forward. What were you thinking expressing YOUR opinion on YOUR OWN BLOG? THE NERVE!!! Sorry, but people are ridiculous. I have had quite a few lash out at me over NOTHING. (Putting bumper pads in my child's crib... you know, my child, with the fragile skin, who can rub off his whole cheek in one swipe against the railings...) Grrr.

I love you guys, and I'm glad to see you taking the 98% good and brushing off the 2% pissy and judgmental.

Praying. :)

Emelie said...

Hi!!! I read your blog ALWAYS and I love you. Daylon is a miracel and you are sooooo strong and brave. Big hug from Emelie and Elly with JEB in Sweden.

Ellen said...

I am also sorry that during this rough time, that people have to make rude comments to you!
Why can't people remember that alot of blog writers do so to keep THEIR family and THEIR friends informed and us non friends and family should be blessed we have the opportunity to read along. And why does it not register in peoples minds that right now you don't need the stress of negative comments of any kind! I keep Daylon in my nightly prayers. Happy Birthday to Caleb! May God Bless you big time!

The Cookiegal said...

you don't know me - I randomly found your site though while looking up something for my son Alexander. He is being treated right now for Stage 4 Neuroblastoma and will have a BMT at the end of December.
I am so sorry that people gave THEIR opinions to you about the baby sign! You have every right and reason to NOT to it. People try to be so helpful sometimes, and in their helping they can make things worse.
I hope Daylon's evaulation goes well.

Nancy Whipple

lizz0318 said...

I think you're doing an amazing job with Daylon. He is such a cutie and to me, following your blog, he looks like he's doing great. You have a beautiful family and what you are all going through is huge. Don't let others opinions get to you. If I could be half as good a mom with even half as much going on as you have I'd be happy!

Keep doing what your doing, ie. loving and caring for your family.

Susan :)

goodie girl said...

Daylon has the best help for him ever - his family. With older brothers and sisters he will do things those doctors cannot immagine.
Blessings for today. sg - KS

Anonymous said...

Friends of bella here - you are right each family does what they need to do for their loved ones! You stick to your guns you know your boy the best! So nice to see him (by pic) out of the hospital and happy!

Tina in NJ

Jen Burns said...

You handle things with such poise. I admire that. It is a fool who takes offense where offense is not intended. You are such a good mom.

The Lewis Family said...

I love your morning birthday tradition and if you don't mind I am going to copy it :)

Anonymous said...

Before anything else I want to say how very grateful I am that you share Daylon with us strangers. Your family has become such a major part of my life. I pray for Daylon constantly. I check your blog daily (I don't expect you to post daily though!) to help me pray for what he needs that day. As I read your post my first thought was "Oh my God, I hope she is not forced to decide to stop posting because of less than helpful comments." I would feel like I've lost Daylon and this strong spiritual connection he has forged between my self and God. Whenever I read your post and you are particular concerned with something I pray even more for Daylon (if that is even possible - already pray throughout the day). So, having said this, I would understand if you decide that dealing with judgmental comments on top of everything else you deal with is too much and stop posting but it would be very sad for me.

Know that there are many of us out there, who having not ever met you, pray for your son and your family constantly. I am praying for him to get of dialyis, for him to be a happy baby, now for speach, for God to enlighten every doctor and nurse that crosses his path, for God to grant you and your husband strengh, energy, patience and more of this positive attitude that your posts radiate each time.

I have posted less than a handful of times here, but each time I have felt like words hinder my ability to tell you how much your family means to me. Praying for a good evaluation on the 28th that provides you with accurate guidance on how to race against time - I can only imagine what you feel like in trying to give Daylon the best shot at a normal life.

Bobbinog said...

Its pathetic that people can give negative comment and feed back to you when they have no idea at all what you are going through and dealing with on a daily basis, not to mention your thoughts for the future.

I believe a mother should follow her gut instinct and go with it.

He is doing so much better now if you compare him to 2 months ago. He has been through alot in his 1 year. Let him adapt at his own pace.

I think you guys are fantastic parents and family to him. Give hime love and support and he will do well.

Keep it up!

Anonymous said...

Love the pictures of Baby Daylon with Brian, they are priceless. Daylon is looking good and he seems to be happy. For all the things he and all of you have been thru you are all so amazing. What wonderful loving and caring parents you are to all your beautiful children. You can just see the love you have for them and everyone. Bet the Primary Program was great. That is the Sunday I like the best when you get to see the little children perform, it is such a pleasure and a blessing. God Loves All the little children. Looks like Caleb had a great birthday. Keira did a great job on the cake and Violet just added the final loving touches. All the pictures are wonderful. Hope all is well with all of you and that you are getting some rest. It sure looks like the kids are excited about Halloween. They will have lots of fun. Praying for Baby Daylon as he progresses, he is such a strong baby and he is so cute. Love the laughs of his. Our Thoughts and Prayers are with all of you, keep the faith and stay strong. You are such a great and loving family. With all the love and support you give Daylon he will do well. Hugs for all of you from CA. We Love Your Family.

All Our Love;
Myrna & Dwight CA

Anonymous said...

Praying for Daylon and your family! Thank you for sharing him and your family with us! I hope the negative comments will not stop you from sharing him and your family with us.

Happy Birthday Caleb! (Love the cake)

Becky (Texas)

Mom to Many - Cheryl said...

Oh, I love seeing cuddly babies in their Mommies bed. (I know I am a sucker for babies.) It is so nice to see him look so soft and sweet with such lovely healthy skin.
I love your Donut tradition! My kids would think that was GREAT!
It's fun to see Daylon interacting! What a sweet -beautiful- boy!
Thanks for your comment. :o)
You are in my prayers.


Nancy said...

Love that picture of Daylon napping. He looks so comfy and peaceful -- and look at that BEAUTIFUL skin!

Happy birthday to Caleb! He's such a cutie. Love the donut tradition.

Still praying :)

Anonymous said...

"Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. For where two or three come together in my name, there am I with them." Matthew 18:19-20

I am up for another day (or days) of united prayer for Daylon. Last time when I knew everyone was praying for Daylon at the same time, I could literally feel God's presence. It was amazing.