Help! This dogs getting me.

Help! This dogs getting me.

Wednesday, December 24, 2008

Merry Christmas!

Merry Christmas! We are sorry it's been since Thanksgiving since we updated all of you. Please forgive us.

Jameson is doing well. In so many ways he's the same as he has been all along. In other ways he is progressing a little bit. Let's start with the progressing part, it's more uplifting. Yesterday he gave us kisses!!! Remember when your kids were babies and they kissed with open mouths? It was a milestone passed. I said to Melisa last night at dinner that, "we spend so much time taking care of Jameson that it seems that we forget to enjoy him and teach him the little things like giving five and giving kisses". It was awesome to see him smiling from ear to ear. He is also wanting to sit up. When we are holding him on his pillow he tries his hardest to do a sit-up and get out of his laying down position. He's so alert and wants to see everything that's going on around him. We have started to sit him up on the sofa with one of those horse-shoe pillows around him. He's doing great.

As for the "same" part, his skin has not improved. He's still blistering each and every day. We are still bandaging his entire body each and every day - no days off. He doesn't even give us the major holidays off :) His hands and feet still pose the biggest problems. They blister and callous daily. When we finally get some of the thick nasty skin off we are so excited until the next day and there is nothing but blisters. It seems like a never ending process. Jameson is still not eating well either. He's just reached 12 pounds soaking wet. He's not even close to being on the percentile chart and that is causing some concern. Last, he is having some respiratory and breathing issues and we are giving him albuterol breathing treatment's 3 to 4 times a day. Have you ever tried to hit a moving target? Try holding a mask up to a babies face while he's squirming all around. We aren't able to put the mask directly on on his skin because it would blister him, so just picture us holding the mask to his nose and mouth without it touching him. IT'S A REAL SIGHT (you should be laughing out loud right now). We have hope though!!! We know 2 things that keep us going fervently each and every day. 1. Jameson is God's baby and he is so loved by the Creator of the heavens and earth. God is holding baby Jameson and has an incredible plan for him. 2. We have the hope that Jameson's skin will repair itself at some point. We don't know the timing of this, whether it will be 2, 3, or 4 years from know, but according to the diagnosis we have that hope.

We went and saw a nutritionist yesterday and she shared with us some encouraging news. She is suppose to be the best in Orlando and she agreed to come to the office yesterday even though she is on vacation. We will meet with her next week after she does her research on EB. We will let you know what we find out.

Please pray for Melisa as you are praying for Jameson. Some days are so hard for her. She's a wonderfully strong woman, yet some days really get her down. Thank you for all your concern and love for her.

Have a Merry Christmas. We love you all.

Todd

8 comments:

Drew, Michelle, Luke and Tetyana said...

I have been wondering about you all and praying.

I love the picture of Jameson "eating"....he is too cute!

Merry Christmas....

Susan said...

Todd and Melisa,
It's good to here from you guys again..Jameson seems like a very happy baby.. I continue to pray for the entire gang, but I have been praying a little more for Melisa.I know how hard it is with a healthy newborn, so I can only imagine what she goes through each day and I'm inspired by her strength and her faith.. and I will let the church know to pray for her also..I love you guys..
MERRY CHRISTMAS AND HAPPY NEW YEAR
Love, Susan

Hage Family said...

Thanks so much for the update!! I've been checking by often! Little guys is looking more and more like Nicholas I think!!! Very adorable indeed!

I hope you 5 have a very Merry Christmas! We love you!!!
Tiffanie

Debbie Rector said...

Merry Christmas to all of you! At this time of the year I think how Mary was chosen to be Jesus mother. What an awesome gift for her!Just as Mary was chosen so were you and Todd to be Jamesons daddy and mommy! God knew without a doubt he had picked the perfect parents to love and care for him.I admire your strength and stability and most of all your love for the Lord who guides you daily in rearing all three of your boys.The power of God is so apparent in your lives.Melisa it is ok to have down days we are human but don't ever think for one minute you're not doing a great job because you are an amazing mom.(You had a wonderful teacher,Your mom I love her!)May God continue to give you and Todd renewed strength daily and fill you with wisdom from above for each new situation that arises.May God bless you in the New Year!We love you and those big blue eyes are adorable.
Glen and Debbie

setsma said...

Oh, I so wish I were there to give hugs all around. We love you guys so much and pray that you will be given the grace for each day. Melisa, an extra big hug for you. I can just see your wonderful smile and know that God is near you.

Merry Christmas and God bless you in the year ahead with hope and healing.

Aunt Lynn

erin and britt said...

Merry Christmas! Britt was trying out a ripstick today and it took me back to your kids getting one last year and Britt trying it in the driveway. What a difference a year can make! (no injuries for Britt after riding it, just in case you were wondering!) Hope it was an exciting day for you and the boys...Santa brought Heelies (against my better judgement) so it has been even crazier than usual here. Keep hanging on you guys. His pictures are so precious...and how right to try to enjoy his cute little personality and kisses as much as possible. What a gift from the Lord. We talked just today about making a trip your way...we miss you all. Much love, Erin and Britt

J'Aime said...

Hey,
I am so glad you updated this. I found your blog through Melanie's and got reading it...then it stopped and I was worried. Thanks to FB, Mike let me know that they had seen you guys since the last post. :) The blue eyes picture is so you. My heart hurts for you guys, what a challenge to watch your little one have pain. I pray for Melisa. I have two little boys and they keep me busy and tired! Keep posting so I can keep praying. May the new year bring good new things for Jameson---awesome name by the way. J'Aime

Tracy said...

Hey there. Jameson is looking so different! What a great smile. It has been a while since I have checked in on you all. Hope you had a blessed Christmas. I will pray for growth!
God bless,
Tracy, RN