May 6, 2008

updates

Cohen turned 2 months old yesterday!!! I really can't believe it - 2 whole months - not hours!! Other than the feedings, he is really a pretty easy baby. He sleeps well during the day and at night. He loves his baths!! About a week ago, I laid him in it and he instantly went to sleep!!! He is starting to like his play gym a little more so that is fun. He smiles a lot and loves to coo. He makes lots of different noises and will talk back to you. Too cute. He loves to be naked and to have a clean diaper on. He likes his mobile and instantly cries when it turns off. He still doesn't love to eat and he hates going to the bathroom too. Feedings are maybe slightly better but we're still on bottles. He was about 8 lbs at the pulmonologist on Monday.

So..We went to the pulmonologist and we are weaning his amount of oxygen down. He is on about the lowest dose now and we'll keep him there until our follow up in June. His lung xrays looked good but the radiologist didn't do a comparison to his ones from the NICU so we're waiting to hear about that.

We go to the cardiologist on Thursday and to the geneticist next Monday. We also have his NICU follow up next week. I am interested to see how all of those go.

We have a coarse of action for Chris now but are waiting for insurance approval( gotta love them). They have def. diagnosed him with Ankylosing Spondylitis and he will be taking Humira for it. We are glad for treatment but not crazy about the side effects. It will lower Chris' immune system and make him more susceptible to infections - especially respiratory infections - not what we need in our house!!! We are just going to have to exercise trust in God through all of that. We know he is faithful.

Cort's ear infection was all cleared up so no ENT for now! Yea!!

On the playgym

In the bath...

28 comments:

Anonymous said...

Im so honored that the picture I took this weekend made it to the blog. I miss you guys and am SO glad to have gotten to snuggle those sweet little boys! Love you!
Michelle

Rebecca said...

WOW!! HAPPY 2 MONTHS COHEN!! LOVE all the pics Emily and appreciate the updates! You have a BEAUTIFUL family! will cont to pray for Chris and medicine to work without lots of side effects!! cont to pray for you!!!

Kristen said...

My goodness...what precious pictures! And to think that he wasn't even supposed to be here now. God is good.

Brian, Beth, Garrett, Lucy, Brooks and Deacon White said...

thank you for continuing to share your journey here. praise god for the MONTHS you've now had with cohen - happy birthday, little sweetness! what a blessing - how amazing is the God we serve? we continue to pray for your family...especially as Chris begins to face these new challenges.

The Carsons said...

Wow--God is good, isn't He!?!! Even though it doesn't make sense to me why there would be a 2 month old who needs to stay away from respiratory infection in the same house as a Daddy who is about to become more susceptible to them....GOD IS IN CONTROL and has known all along that on May 6, 2008 this is exactly what your family of 4 (OF FOUR!!) would look like. Now THAT is cool---even if it doesn't make sense to us.
Phil 1:6: I am confident of this very thing: that HE who began a good work in you will perfect it until the day of Christ Jesus.

K said...

I'm so glad that things are looking up lately for your family. I looked up ankylosing spondylitis and Humira and hope all goes well with this treatment.

My prayers are with you.

Anonymous said...

Happy 2 Month birthday, Cohen!

All In Lexington said...

Emily and Chris,
I was getting ready to email when I saw this post. I am actually taking Humira for my crohn's disease. I was on Remicade, but recently switched and I just noticed in my paperwork that it was used for treating the AS that Chris has. I have been on the humira for 2 months now and have had no side effects. The injections are really easy and not too painful, either so that's good. The remicade that I was taking is the same type of medication, so it lowers your immune system too and I never seemed to have trouble then either! Just wanted to give you some encouragement that hopefully Chris will not have too much trouble staying well! I'm glad they found something to treat him with. Please email me if you have any questions about it. Sorry for the huge comment! Love all the new pictures! Happy 2 month's to Cohen!!! Love ya'll, Rebekah

boltefamily said...

He is the cutest little guy! Thanks for sharing! Happy 2 month birthday Cohen!

Anonymous said...

I have been following your story.....Cohen is absolutely adorable!

Happy 2month Birthday!

Jessica said...

Oh my goodness, that last picture of Cohen during bathtime is just precious!

Laurie in Ca. said...

I am so thankful to read that things are turning around in your house!! Thank God for answered prayers. Cohen is just getting cuter by the day and he looks so happy. Praying for all of his upcoming appointments to be great. Prayers continue for all of you.

Love and Hugs, Laurie in Ca.

susan said...

Hey Em!

It's Susan Jones...I'm so happy for you guys...what a miracle and blessing from God! :)

On another note, I was on Humira for a while b/c of my Rheumatoid Arthritis. I didn't have any bad side effects, and it worked well for my RA. Just thought I'd pass that on! :)

missing greenville...
susan

Anxious AF said...

precious.....Happy two months big man!

Anonymous said...

Happy Mother's Day, Emily! I thought of you when I watched some moms being honored on Regis and Kelly yesterday. Someone needs to nominate you next year for all the taking care of your boys you do!

Yvette said...

Dear Emily,

Just wanted you to know that I was thinking of you today - Happy Mother's Day! What a very special day this is to have your precious little boy here with you, what a miracle he is! I am so thankful the Lord has blessed you with time, we prayed for 1 day and had 56 days so I know what you are feeling. Enjoy every day and live in the moment.

May the Lord continue to bless your family. Praying for you every day.

Love, Yvette Hostetter
tristanasher.blogspot.com

Chrissy said...

Happy Mother's Day Emily! You are a precious Mother of TWO!

Diane De Bruhl said...

Happy 2 month birthday Cohen! He looks so happy & healthy in all of the pics - Praise God!!!
Diane & Max

Susan Cronin said...

I was so blessed to have seen you two at CDS yesterday. He is one of the most beautiful babies I have ever seen. The way he smiles when he looks at you is so precious. What a gift from God.
Love, Susan Cronin

Laurie in Ca. said...

Hi Emily,

Just thinking about you on this Tuesday morning, hoping all is going good and that you had a wonderful mothers day. Praying for healing for all to continue in your home and for there to be much joy.

Love, Laurie in Ca.

The 4 Pierces said...

It was so great to run into you guys downtown a few weeks ago and meet your two sweet boys. You can keep up with us at http://the-4-pierces.blogspot.com/ . Hope to see you all again soon!

Anne

Unknown said...

Chris and Emily, You don't know me, but I have been following Cohen's progress from before he was born and wanted to let you know that I am one more praying for him and all of your family. Praise God for His Grace and Mercy. The story and pictures are so wonderful and uplifting. Cohen is too precious for words in so many ways. Cort seems to be quite a little trooper and is precious also. Wanted to let you know, since you mentioned Cort's haircut, that I own a hair salon for kids - Jelly Beans - and would be honored to give you complementary cuts for Cort and Cohen if that would be helpful for you. I will continue praying and thank you for the wonderful testimony that you two are living. Gloria

Anonymous said...

Just checking in to see how you all are. Hope things are well.

Laurie in Ca. said...

I am just checking in on this Friday the 23rd, letting you know I am thinking about you and praying all is going well. Have a wonderful weekend.

Laurie in Ca.

Anonymous said...

So exciting to see these pics and hear that things are looking up for you all. Praising with you!

Tonya said...

Hi Emily and Chris!

Cohen is just adorable!!! I am so happy you found me!! I am excited to read more about Cohen and Cort. If okay, can I add you to my blog??

If you have any questions, please let me know!

Renay said...

I just found you from Tonya's site and wow, what a story you have! I have a similar story as our son was supposed to have thanatotropic also and is now a beautiful almost 19 month old (with no dx) and I had severe preeclampsia too...anyway, just wanted to tell you what a precious miracle boy you have!

Anonymous said...

Good to see you here Emily! I found you through Rachel's blog (love your family pictures!) and I hope you have been doing well since RNE.

All my best wishes to you and your family!