Saturday, October 16, 2010

Day +112

 I don't know what's wrong with me. I've stare at this computer screen for 10 minutes and well, let me just point out that this is where I'm starting. My brain is dead apparently. =)
 Daylon is doing pretty well lately. Today was kind of a rough day for Daylon (fussy, hard time being up,  etc.) but overall, he's been happy and making baby steps forward.
  So, kidneys...things are going less than great with his Creatinine at 3.5  (should be below .58) and his BUN is 100 ( should be 19 or less). All this basically means his pee is keeping his weigh down a bit, but he's not filtering the poisons from his body. He is gaining about one and a half kgs every other day (like 3 lbs), so although he's keeping some weight off, he's still gaining without dialysis. Yesterday, they tried to take off 1450 grams which was NOT happening. The funny thing about dialysis, is that it's not as easy hooking up a patient and punching in a number. There's various sorts of pressures to worry about and then the patients reaction to the process should come into play as well. The problem with outpatient dialysis is that they can't give any meds for pressure's support.  Taking off that much is asking too much out of such a little guy. It would be like taking 20 lbs off an adult. Yeah, that can't feel good....not to say the ideas not appealing! haha! :)

2 nights ago...So, I know I've already shown you pictures of him playing with his "Tickle Me Elmo", but he LOVES this toy! He totally cracks up when Elmo starts vibrating and laughing! The kicker is we don't even watch Sesame Street! It's was just a great BINGO win! Good pick, Grandma! He's so sweet!

  The only other new thing with Daylon is his speech...or lack there of, more realistically. Daylon can definitely understand more and more each day. If you ask for something, he'll give it to you, or if I tell him "I'm going to put your medicine on your teeth. Don't bite mommy." he'll open his mouth and not bite (This is HUGE in my book because being bitten by an EB kid's daggers in less than fun). Since we've been home I've not heard him say "Mama" or "hi" anymore. If you work long enough, I mean all day long enough, then he'll say "up" or whatever the word of the day is. If we try to move on to another word, the first word is gone. I know I've said this before, but pre-transplant he was such a talker!! He was 10 months old and said about a dozen words but the funniest thing is that you could ask him to say anything and he would give it a try. It wasn't like he knew what he was saying or that he was committing the word to memory, but he could say, "badge", "midnight", stuff like that. I know he wants to talk...his eyes light up, he starts rocking, moaning and is just so excited when you ask him to say something. As his mom, I have to admit that it's a bit tough on the heart strings to see him want to do something that he seems to be physically limited from doing. We have an appointment with the neurologist on the 28th of the month to go over his latest MRI (he's not had it yet), possibly lowering some of the meds he's on, and talking about the idea of using sign language with Daylon. The speech therapists have wanted us to start teaching him baby sign language, but I'm not a fan of the idea. What I saw as a preschool teacher is that the kids who use the baby sign speak later, than those who don't since I'm assuming, there's not much incentive. I'm worried that if we tried to teach him sign language then it will slow his speaking process even more. On the 28th we will talk about his overall ability to speak long term and the possibility of using American Sign Language.
  Oh! I almost forgot! The official results for Daylon's PT test were mailed to us yesterday. Here they are:
Gross Motor Skills  (FYI: Daylon's 15 months old)
Stationary: age equivalent to 4 months old
Locomotion: age equivalent to 1 month old
Object Manipulation: age equivalent to 12 months old it's not great...but remember he's improving everyday. We believe in Daylon and support him to the best of our abilities and I know he'll be where he should be one day.

 Here are some photos from the last couple of days:
Jumping in the leaves in the Courtyard

Singing Time with Jammin' Jan
During karaoke and dance time. EB siblings from left to right: Parker (Payton's brother), Chloe (Elle's sister), Caleb, Ali (Bella's sister) and Keira

Lion cubs!
Presenting.....Keira and Ali!

While all four of Daylon's one year old molars and three of his eye teeth came poking through (that's right. 7 BIG teeth at once), Keira lost her 7th tooth!

I wanted to give a very special "thank you!" to Melanie, Kendra and Lacey from North Carolina who made these T-shirts for their race to bring support and raise awareness of EB! We are honored that you used Daylon as one of the babies on your shirts!

My hair is covering the "I" in "I Run For" 

I feel like our four little butterflies have grown up together, even though we haven't all met. All four were born in the US within a couple months of each other. I love these kids!


Anne Dye said...

Still praying for Daylon over here in Italy! On an encouraging note- my 4th kid started learning to speak English and using ASL signs at the same time and now we have thrown Italian into the mix as well. She's had absolutely no speech delays, actually she is above average in her speaking ability and totally adorable when she signs! Kids are so amazing!

Linda said...

Hi Jenn: Beautiful pictures, as usual. Love your family. They are so precious.
Still praying for Daylon. He will get there, it will just take a little bit of time. Love all the EB families. Love and Peace Leah's Nana

Becca said...

Obviously individual children are - well - individuals, but the research shows very clearly that learning to sign (or even to use an electronic communication aid) does not delay the development of speech, in fact it advances it a little bit. Interestingly, exactly the same is true for children who use wheelchairs who then learn to walk.

What's important is communication, not speech - for social and emotional development, psychological wellbeing, expressive language and of course the communication of needs and wishes.

All the very best, a friendly lurker who uses a communication aid and sign language :)

Anonymous said...

I find your experience as a preschool teacher interesting. It is the exact opposite of what research has found in regards to using signs with hearing babies.

On a personal note, I have two children (ages 1 and 3) and I taught both of them some basic signs as infants (milk, all done, help, sorry, more, etc.). They have always been ahead of the curve in regards to verbal communication. And, we never really experienced the stage where children tend to get frustrated because they can't tell you what they need or want.

If Daylon is eager to communicate with you, using a few signs along with the vocalizations might be the jump start he needs. Just a thought...take it or leave it.

I'm glad to hear Daylon continues to improve each day. I wish your family the best.

Mom to Many - Cheryl said...

I can identify with not knowing what to say. :o)
As Dori says, "Just keep swimming."
Life seems to just keep going. That is something we can count on.

I am sitting here today with great pause today.
My Dad and my husband's Dad have been diagnosed with Cancer in the last 3 weeks. Wow.

Life just marches on.

Just keep swimming.


Alina_Hernandez said...

I LOVE the pictures! I too (with help from my mom that works in the Special Ed department at CNUSD) have taught by 16 month old some baby sign lannguage.. and I can't even tell you how many times people have been amazed by how much he talks.. At 16 months I couldn't even tell you how many words he knows and says. Like the blogger above me said - everyone baby is an individual.. My nephew's mom and my mom have worked with my nephew the same amount as with my son and he doesn't talk nearly as much as my son. At least if you do it he will have a way of communicating his wants and needs. BUT it is ULTIMATELY YOUR decision. I think you have done an AMAZING job as been the BEST Mommy to all of your kids.. they all are beautiful AND PRETTY kids!! ;)

I have never met you... but I feel such a deep connection to your family. Maybe because of the fact that you are from Corona. I was born and raised in Corona and have since moved to Riverside (not a big change) but I just think you are the greatest parents I've even known (about)

Keep up all your great work and I'm sure you will make the right decision for Daylon. Which I must say I have always that was a pretty baby! He is just seems so lovable! I look at your pictures of Daylon and there have been so many times that I see my son in his facial expressions. I love it!!

Praying for you all always! :)

Anonymous said...

I am a pediatric speech language pathologist and have been checking on your family since the beginning. Please check out the information out there regarding sign language and expressive language development. The research shows exactly the opposite. Kids exposed to nonverbal communication actually begin to use verbal communciation sooner.

Think of it as a bridge to verbal communication, not a replacement. It will also strengthen his receptive language. Picture communication is also another great tool for supporting expressive language.

Anyway...all my prayers to your beautiful family. I find your strength to be such an inspiration!

Love and prayers--
Sara from WI

Anonymous said...


Baby steps, that is what these kids do. I know things can get so frustrating during, after BMT. Speaking-- who needs speaking when he has that great dinosaur growl, besides I think when he really starts and he will sooner than you think (I pray that he does) you will not be able to stop him. lol Anyways hang in there and good things are just around the corner. Praying for creatine and bun to get to normal!!! Elle's dad

Anonymous said...

I love that shirt! Where can I get one?

Lisa said...

I'm so glad Daylon is doing well...I'm hoping his kidneys will get back to normal soon too. As for the PT results, it's only UP from here! I have a cousin who has had significant delays secondary to a genetic disease, and her progress has been incredible. Every kid is unique and different, and with some hard work he'll get there too. I take such pride in Daylon's little victories, like when he sang with his siblings last week!


I totally believe that Daylon will be able to do all those things again. I know it must be so hard cause you love him so much and you want him to be able to do everything and more. Baby steps.....problem is with that is it takes time and patience. I for one am not good with the whole patience thing. Hang in there!! I can understand why you wouldnt be a fan of sign language... I wouldnt want it to set back of his speech either. It will be good to hear the Doctors take on it all. I am sure glad he has that tickle me Elmo to lighten up his day :)

Keira- Congrats on your 7th tooth!!!

LOVE LOVE those shirts! How nice of them to make you all one!

Emily said...

Hello there,

I had to agree with your other readers who wrote to let you know that sign language often promotes expressive language. There is in fact research to suggest that sign and speech activate the same parts of the brain. I've seen children with autism use sign language to prompt themselves to vocalize. You see their hands moving and then out comes the word they were trying to say! It's super cool =). Plus, at moments when they are unable to say a word (the brain is tricky and for some people with brain injury abilities come and go), they can use the sign to communicate their needs. I can't imagine how frustrating it would be to want to say something and not have any way to do it. So, sign language is wonderful all around, if you ask me. I plan on teaching it to my kids, typically developing or otherwise, because it helps promote language development and even shows improved cognitive results later, at the age of 4. We understand so little about the brain, but I believe (from my experiences teaching people with disabilities) that there is a strong connection between sign language and vocal speech. Best of luck to you and Baby Daylon. I'm keeping kidneys and overall health in my daily thoughts!

The McLaughlins said...

I am so proud of the progress Daylon is continuing to make. Every little bit is something. I understand your frustrations though. I would be frustrated too if my son or daughter just wasn't the same. Daylon has the potential and the strength to get there though. He wants it, and we all want it for him. He is one of the strongest kids I know(know of). He'll get there Jen.

I have taught both of my kids baby sign language. My daughter is now 2 1/2 and my son is 9 months. My daughter talks up a STORM!! Sign language didn't hold her back at all. Personally, I believe she is better for it. She speaks better than all the other kids in the nursery at church and in her play group. Some kids are older. Every child is different and every parent as well. If you are not comfortable with it and YOU KNOW DAYLON BEST, then don't do it. But, it may help him communicate with you in the meantime.

I am continuing to pray that Daylons kidneys kick back into gear and start healing. I'm also still praying that he doesn't have GVHD. When will the drs know for sure? He's looking SO GOOD!! I'm so impressed everyday by the improvements I see in his pictures. I can tell that he is a much happier baby. I'm sure that has a lot to do with the fact that he gets to be home with mommy and daddy and his siblings. That's the best therapy!!

Also, I have to say that I LOVE those EB Walk Shirts. They are awesome. I did a 5K charity walk today for NBTS(National Brain Tumor Society). My sister Megan has Stage 4 Terminal Brain Cancer. She was Diagnosed last year on Jan. 15, 2009 at just 31 years old. She's a fighter! Just like Daylon. STAY STRONG!!

Lots of Love,
Amber McLaughlin, CA

Anita said...

Gorgeous pictures!! Must have a great camera!!! I think you're SUPERMOM and don't know how you manage.... and do it all so well!! AND also manage to send flowers to others for their birthday!! I'm speechless!!!
Thank you!!

Carrie said...

I am a special education teacher- go for the sign language. Use ASL and not baby sign language. It encourages communication and that is the goal. If you use the sign with the spoken word then it should not delay language, in fact it encourages it. You could ask for an assistive technology device or even pictures to help if you are concerned. But, if he can do signs then that is all the better!! Honestly I would start with signs ASAP. Since I use sign a lot, I used it with my own little girl. I don't know if that is what helped her language but at age 1 she was starting to put two words together for short sentences as well as still signing. Even at age 3 she is far advanced in speech.

Timea said...

Your family is an inspiration! Congratulations Keira on your tooth, and happy birthday Caleb. All of your photos are gorgeous. Daylon, you look more and more beautiful everyday, it is wonderful to see how your skin has improved. Praying everyday for the after effects of the stoke and many hardships will subside and more healing to happen. We pray for strength for his body and mind. You are all doing such a great job caring for him and it shows! :)
Elle's auntie Timea