Ephesians 3:20 "Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us"

Saturday, February 20, 2010

Bottoms Up!

So Caleb has been doing great with drinking. He has been drinking around 30 oz of fluids a day! CRAZY huh?!? We are so excited! He is doing so well that we have stopped all feeds by his feeding tube at night. Our little boy is getting all his fluid intake right now by mouth! We are praying hard this continues! We would love to get his mic-key button out! The next step will be to figure out what to do with his meds as he still gets all of those via g-tube, and some are through the night too! So this will be tricky, but he can do it! We have faith!

Also another tidbit of great news...he is kicking that nasty cold on his own! Once again he did better with the cold than I did! He is closer to getting rid of it than I am and he required no medicines to help! WOOOOOHOOO Caleb! I am so proud of my lil' man! He is so awesome!

We have a busy month coming up of clinic appointments coming up so I will update everyone on the appointments as they happen.

We also may potentially be going to Duke in the middle of March. We were contacted by wonderful Dr. Markert (the amazing Dr. that did his Thymus Transplant for Caleb's immune system) and they have received grant money to do more research work in regards to the Thymus Transplant. This phase of research would be to see if and when the body stops making T-cells after Transplant. It is a non-evasive phase of research. It consists of a 24 hr admission at Duke where Caleb will drink certain amounts of 'heavy' water (certain water that bonds to t-cells) every couple of hours. Then he will get doses of this water twice a day at home for the next month or so. Then blood work will be performed and analyzed. When Dr. Markert called me to ask if we will be interested there was not hesitation in my response once I heard it was non-evasive. She is an amazing woman, who has saved numerous kids, and how can you say no to such a remarkable woman. We love you Dr. Markert. I will be going over the consent with Dr. Markerts wonderful head RN, Stephanie on Monday. So I will update on this too once we learn more!

Also, Bri and I went to the high risk doctor yesterday that we saw when we were pregnant with Caleb. Right away on ultrasound they noticed the smaller of the twins didn't make it. I wondered if it was going to make it as in previous ultrasounds it looks so tiny compared to the other. Dr. Thomas was great! He sat in the room with us and looked at everything on the other baby: the brain, heart, spine, face, fingers, arms, ears, eyes, nose, lips, etc. And so far everything looks great! They did ask us if we wanted to know the sex of the baby...We wanted to keep it a surprise when pregnant with Caleb, but with all the complications we found out Caleb was a boy. With this pregnancy, we felt like we have had enough 'surprises' in our life. We also were worried that if it was a girl and we didn't find out the sex we would be dressing her in a lot of boy clothes! So they were able to look at the sex plate and let us know that.......IT's A GIRL! Caleb is going to have a little sister. Personally, that is a great scenario as I had two older brothers looking over me when I grew up (and they still do!) and now Caleb can watch over his lil' sister!

God Bless you all!!

God Bless Caleb!!


Crystal M. said...

Congrats on the drinking Caleb good job!
Congrats on the baby girl and I am so sorry about her twin, you know Crystal is a VERY pretty name...LOL! Just Kidding name her whatever you want.
I will keep you all in my prayers.
Crystal and Eva
PS when are you due??

The Claytons said...

Way to go on the drinking Caleb! That is so awesome. Your gbutton will soon be a thing of the past!
Congratulations on that sweet baby girl that you will have.... when is the due date? I am very sorry to hear about the loss of her twin. Keeping ya'll in my prayers as you go through this pregnancy.