A Very Special Case.

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 als...

Case has a special kind of love. A pure, free love. Since Case was boon he has been showing me how to love without judgement. He has been the cause of hundreds of relationships in my life. From doctors and nurses to moms and dads. One if my favorite friends that Case has brought into my life is a lady named Sarah. I met her at Wal-Mart. I was struggling to hold Case, manage Lainey and put my groceries on the belt. A lady behind me in line asked if I wanted her to hold him (it was Sarah:). I said, "Sure! Just don''t run, I worked to hard for him to lose him now.":) She laughed and asked me about my special Case. We became fast friends. We see each other at Wal-Mart from time to time and recently started talking on the phone. She is one of Case's biggest fans.:) One thing I've been shown lately is that one of the biggest blessings God can give us in this life is the blessing of friendship. "May there always be work for your hands to do, may your purse alwa...

 We visited the cardiologist today and went to his pediatrician. The Cardiologist is from Pittsburgh but comes to the Altoona Hospital to see his patients every Friday. He is a really great guy and loves Case.:) Case is doing well heart wise and will get an echo at Children's on the 26th. The echo is to check for the PFO. He weighs 12 pounds now! YAY. As far as him refusing to eat by mouth, I had a long talk with his gastro doctor, Dr. Ruldolf. He is such a fantastic doctor! He said we don't want Case to loose all desire to eat by moth. He put him on a new medication that I give him 3 times a day 15 minutes before a feed. It is suppose to help him empty his stomach so he feels more hunger and should help stop the retching. He has been on it for 2 days and if it isn't helping lessen the retching after 5-7 I'm to call him back.  Case is eating very little the last couple days, more then he was but nott much. We shall see what the feeding clinic at Children's hospita...

Do you remember when I mentioned Lisa and her son Ramsey in a previous blog post? Ramsey was born on January 12th with a life threatening birth defect and spent 61 days in the hospital. Soon, Ramsey will be one! In honer of his birthday, his family will be donating 61care bags in 61 days to the Ronald McDonald House. The Ronald McDonald house is such a great place and means a lot to not only Lisa, me and our families but to thousands of families with sick children. If you like to help by donating money or items on the list click  here . If you would like to bring items to me, I will get them to the Razzas.:) If you would like to contact me about bringing donations to my home, email me at:  lizrae@gmail.com . Thanks! You guys are awesome.:)

As you may have read on my blog before I feel like when Jesus blessed us with Case He gave us blessing and favor (the definition of grace:). Jesus made Case special for a reason. Instead of fighting this or wishing it to be different, Dan and I have embraced it. With that being said, I'll tell you the truth...filling these big shoes isn't always easy. I have weak moments which sometimes turn into days. These past few days have been rough. The retching continued and became more frequent and Case refused to take anything orally. I felt weak. I ran into some dear, sweet ladies at Panera Bread (two I new, one i didn't) yesterday and had a mini breakdown. I told them the days have been hard and I was tired. They were so sweet and loving. They hugged me. I felt Jesus' love through them and felt much better.   I have never been a big fan of breaking down. It makes me feel weak. After I left Panera I got the song in my head, "His grace is sufficient for me."  Those a...

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” ~ Khalil Gibran Hard to think of Case as a massive character. But he is. He's had some rough nights lately. I would wake up to him screaming and sometimes retching. Case can't vomit because of the Nissen wrap.  RETCH: noun: an involuntary spasm of ineffectual vomiting; "a bad case of the heaves" It's no fun. He was having a hard time tolerating his night feeds. He wouldn't eat much during the day causing me to run 10-11 hour feeds at his max of 39 mls (a little over an ounce) per hour. On top of that his pump broke at some point and was putting extra into him. It was only a few extra mls per hour but was not good. We got his pump replaced which lessened the times he was waking to retch but he still couldn't handle the long feeds at max volume. Sometimes the retching would get so bad, I would open his stomach tube and let him "vomit" out o...

Once Case was born and his health problems were addressed, the only thing keeping him at Children's was how little he weighed. A couple friends of mine (husband and wife) used to say, "Grow, Case! Grow!". Throughout his life that kind of became his chant. Lots of people say this to him often. Like I said before, having the tube in his belly didn't produce the results I expected at first. His gain was slow and he even had a loss since he came home from surgery. This week though, he gained 6 ounces bringing him up to 11 pounds 13 ounces. Awesome!! Getting him to eat enough has been a struggle his whole life. I've had to give this to God over and over. For three months I begged Case to nurse. I pumped, stored and fortified my breast milk until I couldn't any more. The whole time desperately trying to get Case to nurse. He would latch on sometimes and suck a little. But doing that too often would wear him out and cause poor weight gain. Eventually he wouldn't ...