So thankful.

-
So, Case had a cluster of appointments and blood work yesterday and today. We arrived at the Children's Hospital yesterday morning. Our first appointment was in the feeding clinic. We met with Dr. Belest (she is Case's new pediatrician here at Children's. Anytime he is having any kind of trouble or I have any questions I can call her and she can help me or direct me to who can.:). Case's speech pathologist, Heather, an Occupational Therapist, a Behavioral Specialist, Case's nutritionist, Stacy and an amazing nurse named Georgia (I LOVE HER!). The feeding clinic seemed very productive. They changed Case's feeding schedule to 5 tube feedings a day and no night feedings. I will run these feeds through his electric pump for 30 minutes each. I have a feeling some days it will feel like all I do is feed him but that's okay, it's my job and  I've got the best job in the world! It will be nice for Case to have a break from feeds through the night. We are also switching him to Pedisure 1.5 (it has more calories). We are hoping the retching decreases and eventually stops with medication and this new schedule. After that we had a 20 minute break for lunch then went to get him an Echocardiogram. That took 45 minutes and he fell asleep towards the end it was so sweet. We then went straight to a genetic's appointment. That went well, they are doing more tests for syndromes (surprise, surprise:). Genetic appointments always last a long time make for a long day. We stayed at the Ronald McDonald house last night and are staying again tonight. We met with the surgeon this morning. I changed his Mic-Key button, they took a sutcher out that was accidentally left in during surgery and answered my questions. We went straight to an appointment with Dr. Ruldolf (from Gastroenterology) and then to the lab for blood. It took a couple sticks and two nurses to get the blood they needed. After all of that Case is doing well but seems a worn out. He is so sweet and it was great to see a lot of the doctors, nurses, phlebotamists and all the other people here that love him.

Last night around 9:30 Case was really cranky and not going to sleep. When Case is that cranky I can't hook up his feeds because the crying combined with the continuous Pediasure will cause severe retching. I need to start feeds around 9pm so that they are done at the right time in the morning and don't interfere with the day feeds. I was sitting on my bed slightly discouraged with his crying and immediacy realized how blessed I am. Last year at this time Case was still an impatient. I longed to bring him out of his room and here at the RMH with me. I wouldn't have minded spending 100 nights here if I would have been able to have him here in the room with me. Last night I was so thankful. Thankful for Case. Thankful to be his mommy. Thankful that this is the journey I'm on and not another. Thankful to hold him here in the room even thought he was screaming. I was and am just so thankful.


2Corinthians 9:15 Thanks be to God for His indescribable gift!


 In the waiting room.
 Not so sure about the echo he is about to get.
 Waiting for the Genetic's doctor.:)

In the big "living room" on the top floor of the RMDH. He LOVED that car!!

Comments

  1. TestJanuary 27, 2012 at 9:52 PM

    Awe, Case gets to play in the penthouse :) He gets cuter every time I see him.

    ReplyDelete

Post a Comment

Popular posts from this blog

Half-Brained Thoughts from a Special Needs Momma.

-
Image
Top ten thing's I've seriously considered doing when I'm low on sleep and patience. 10. Throwing Case's feeding pump out the window. Really. Some days that thing must beep hundreds of times. He's carrying it around constantly. It beeps when it's empty. It beeps when the tubes twist, kink or clog. It's an annoying, beautiful, life giving machine that I have a love-hate relationship with. 9.  Just driving. And driving. And driving. Alone. With the music blasting. I'd come back eventually but only once I'm well rested with a manicure. 8. Taking the 10+ (front and back) partially filled out papers asking me if my son is "still medically complex and if so to prove it", crumpling them up and leaving them on the doorstep of the office with his bottles of meds, tubes, pump, syringes, all his medical records and maybe some vomit with a note that reads, "Yes, he is still very much the same as he was the last time I did paper work to pr...
Read more

About Case.

-
Image
Case is our fourth child. He has 3 sisters. At 22 weeks pregnant I had a routine ultrasound. The tech seemed calm, ordinary. She said we were having another girl. We named her Parker. "She" was healthy. Typical. Fine. A week or two after that "normal" ultrasound we got a call. There was a spot on our "baby girl's" heart and one on "her" kidney. Not a big deal. At about 25 weeks of Pregnancy, We had a second level sonogram about an hour away from our home.  I was told our baby would be different. Very different. It's limbs were way behind in growth. It had heart problems, kidney problems, and was small. Very small. The doctor strongly suspected Down syndrome or Trisomy. He did an amnio. I cried. He told me this was not my fault. I was doing everything I could. The baby was just made different. Two and a half weeks later, I got a call. I was there, in that hotel. On a mini "getaway" with the family. The doctor called an...
Read more

I have a confession.

-
Image
I have a confession. I'm tired of fighting the food battle. For all of the 17 months Case has been alive, I've been fighting my butt off to get this child to eat right and grow well. The food battle started as soon as Case was born. They whisked him away from me via helicopter (even though we were only minutes away in Magee Women's Hospital) to Pittsburgh Children's Hospital. Once he was gone, the food battle started. I pumped around the clock every three hours to have milk for the time when they allowed me to nourish his tiny body with bottles then with breast. If only it would have been that easy. He was about a week old when they first let him eat, after a day or so they stuck a tube down his nose. Eventually they let me try to nurse. He was too weak. Once he was sent home, they took the tube out of his nose and I was feeding him fortified breast milk every 3 hours (around the clock). I was also pumping. This went on until I could no longer keep my milk (around 3 m...
Read more