Oh So Thankful!

Happy Thanksgiving (a day late)!! I feel so very thankful this year, just too many blessings to count. First of all...I know Jesus and he has saved me, he loves me and wants a relationship with me. Then, there is my husband. I feel so blessed to have a good man in my life. One who helps me and respects me. We are in love and I am so thankful for that. Then there are my children. Benji is so smart and fun, however, he is two and so there are trials and tests but all in all, I can't get enough of him. And then there is Kaiya. I m so thankful to be her mother. She truly a little blessing from God. Life will never be perfect for us but we have our little miracle at home with us and we love her so much. We are so happy to report that she is talking a lot and she is now rolling over. We really thought that this would never happen. I think we you have a sick child you focus so much on "today" that you forget of all of the things that will happen so when she does something new we are overjoyed. Also, very thankful for our family and friends.

We do have one prayer request for Kaiya. She has been spitting up every morning for three weeks. Now she is not like a normal baby spitting up. She does not eat she is fed through a feeding tube and has had a Fundoplication which should keep her from refluxing. In the mornings during or after her first feeding she gags on the mucus that is draining down her throat. The problem is that most often she is unable to clear it herself and I have get the bulb syringe and help her so that she can breathe. A little scary but so far God has taken care of us. We are praying that her runny nose clears up and that she stops spitting up and ask you to do the same. God has taken such good care of our daughter so far and I know that he answer prayers in his own time and we will just be patient. Thank you all who have prayed for our daughter and continue to do so. We are truly in debt to you. We are thankful for you too!!

A night out!

We had the best night! The whole family got out of the house tonight to have dinner with friends. One of the hardest thing about having a baby like Kaiya is that she is not able to get out of the house much. We have to be very careful with her because of her weak immune system so no crowds. Of course there are crowds everywhere we want to go including church. We will get through this and things should be better this spring, after cold and flu season is over. The Dr's told us that Kaiya T-cells are only "mildly depressed" which means that by her first birthday she will probably have pretty normal t-cells. We will not take her much this winter except to see family and friends when everyone in the house is well and that they wash their hands before the hold her. I was not careful about any of this with Benji but I am glad for that, he is as healthy as a horse and rarely gets sick. Our night out, well it was really a night in at a friends house but it was so fun. Benji was able to play with their boys and all of their super fun toys! He had a blast. It was so nice to visit with people and just not have to worry about anything. The meal was really good, pork chops, potato casserole and green beans!! Kaiya even had fun. She slept for awhile but spent some time looking at the Christmas tree and just watching all of the boys play with the train set.

We are so thankful for our friends. I have seen how your real friends let you be who you are and not judge. I love that I don't have to be fake around true friends.

Thank you Frazee family for the awesome night. Hope you had fun too!! Have to have you guys over soon. Love you.

Just want to share this photo of my kiddos. They are pretty sweet. This photo is about a month old already so Kaiya has grown quite a bit since but wanted to share anyway.

*Blessed*

There are days when I feel that I will never make it through. It is not easy having a baby who is not well and there are so many things that we will have to learn along the way with baby Kaiya. However, when I think back, it was the same with Benji. He was our first child and it was hard because we didn't know what we were doing. We were new...we are still new. We are new because we have never sailed these waters of having a baby with a heart defect, DiGeorge syndrome and a weak immune system. I love being a mom, it is one of the biggest blessings of my life but that doesn't make it easy. I am a selfish person. I forget that there are people who have it so much worst than we.

We made a few friends in KC this past summer. One couple stands out to us. Their son has Downs and a heart defect. He has already had two open heart surgeries and is awaiting another in the spring. He has a third surgery to put in a trach and a G-tube. He will be coming home but will have a in-home nurse to help care for him. I think about this couple and how strong and positive they are. I have been a mother longer than they have but they have taught me so much about how to love your children. I also think of the parents that have lost their children. When Kaiya was in the PICU after surgery there was a baby boy in the room next to us who lost his life. Chris just happened to walk through and saw MANY Drs in his room and they were pumping his chest. Another couple, the Stones, lost their little Hadley after open heart surgery. Do I have the right to complain about how hard my life is? Where do I get off thinking that I am more important than the next person.

I guess I have tunnel vision. I think of myself and I take care of myself...forgetting that there are others out there who DO have it bad, worse than me and my problems. I am learning to be grateful for the blessings in my life. I have my sweet baby to hold in my arms, she is home and it growing and doing well. I have a family who loves me and needs me and takes care of me. I am truly blessed by my great Lord and I am learning to just let go and let him work where he will and trust that he will do HIS will in my life.