Tongue Tied

Feb 3, 2012 -Jacob has always been quite tongue tied meaning the skin underneath his tongue was tight and limited his tongue movement. Today at Seattle Children's, he had a frenotomy in which the doctor clips the skin under the tongue. It was a very simple procedure. Jacob took a bottle immediately afterward. The bleeding didn't last too long...at first. It seemed to stop but then started back up again about thirty minutes later. This evening Jacob had a throwing up incident (nothing unusual) and it really started bleeding again. Now every time he cries, it starts to bleed. I was under the impression that it would stop soon after the procedure and that was that. Obviously not for Jacob. If he continues to bleed I guess I will have to call the doctor. He tends to be a bleeder. When he was in the hospital and would get his heel poked for blood draws, sometimes getting his blood pressure later on his leg would make his heel start bleeding all over again...we went through a lot of blankets and socks. I have to say, the tiny bit that Jacob could stick out his tongue was precious. He made little movements that were so sweet. His tongue appeared more dainty. Now his tongue has full mobility and he is enjoying exploring his mouth and hands with his tongue. That's very sweet too, but I think I will miss the tiny seeming tongue with its gentle little motions.

Jacob taking an oxygen break after his bath. This is about as far as Jacob could get his tongue out of his mouth prior to his procedure.

Jacob also had a huge blood draw today (took two lab techs, three pokes, and 7cc of blood!) The doctors are testing for all sorts of allergies. Hopefully, we will have some answers by the end of next week. His skin is looking much clearer though. The steroid cream seems to really be doing its job! We did our first dilute bleach bath last night. Then lathered all up!  I can't bear the thought of wet wraps, so unless Jacob has an unmanageable flare-up, I'm going to hold off on that. Jacob also took a little unauthorized oxygen break during his bath. He seems to do pretty well. We tried this earlier in the week just to give his weeping skin a break. We put him on his oximeter then, and he stays around 97-100% oxygen saturation. Hopefully the doctors will approve daytime breaks soon so we don't have to be tethered to one area of the house.

My Little Valentine

Not feeling too hot but still trying to give a little smile.

Feb 12, 2012 -One year ago, God unexpectedly decided we needed an addition to our family. I never knew my heart could grow so big, and I had so much love to give. Despite all the challenges over the past few months, Jacob has been such a sweet blessing to our lives, and I would do it all over again just to have my dear little boy. He never fails to bring a smile to my face. His eyes are full of wisdom and he has a happiness within him that you wouldn't expect from someone that has been through such trials as he has. Even when he is feeling really crummy, he manages to turn up the corner of his mouth, even if just a little.

"Look how good I can stick out my tongue now!"

"I'm tired, Mommy. Can we be done now?"

February 22~Update

Jacob is feeling worse than ever. We have been to the doctor twice in the last two days. He has what would be just a simple cold for you and me, but it has thrown him many steps backwards. He is fully fed via feeding tube now as his breathing is too labored to eat. He also has a very wet cough and is quite congested. Jacob's ears are fine, and he has been checked out for RSV twice. It has been negative although the doctor said he's acting like and all his symptoms are exactly like RSV. When she said that and said she wanted to test him again, I almost started to cry. We'll get through this though. It's just taking a LONG time! He started a 6-day round of steroids last night, so hopefully that will give him some relief soon but for now they are making him very irritable. (He was like this the last time he was on steroids.) He has spent the last day just crying and crying anytime he is awake (crying makes him cough more, coughing makes him gag and choke, gagging and choking always ends in throwing up.) I can't wait for winter and this cold season to end!