I honestly wish I could take the time to update my blog everyday, but quite honestly, I don't have it to spare! I did want to touch base with our followers/subscribers. Ivee began growth hormone therapy about 8 weeks ago. She has finally gained some weight, as my back can tell me without the use of a scale. She does have some complaints, and I am not sure they are GH related. It seems to me, and her pediatrician, that they possible are, but she has had a sinus infection and drainage, so we are going to wait for the symptoms and side effects of the antibiotic to pass before really seeing what the issues maybe. It does seem that she is learning what growing pains are. I am sure some of the complaints she has with her legs and joints are related to growing pains, something she has truly never felt before. As hard of a decision it was to start her on growth hormone therapy, I am looking forward to seeing my baby girl grow. I just pray over her every night that God will protect her body from any potential harm that the hormone therapy could impose.
Ivee's left eye is patched everyday from 4 to 6 hours. We have been patching her for years, trying to increase the strength in her right eye (damaged from the initial tumor removal in 2006). For a while, she was gaining ground and sight, but lately, the right eye is veering off more and more. If it continues, we will be looking at a possible surgery on that eye. This is something else we pray over every night. Actually, a typical prayer night for Ivee goes something like this...
"Dear Jesus. Help me to walk, help to eat, keep my healthy and heal my body. Help my eye, help me grow, help my tummy. I pray for Lucy, Levi, Chasity, Carlin, Eli, Haley, Whitney, Sonia, Pastor Bobby, Cathy...(and the list goes on). Now I lay me down to sleep, I pray the Lord my soul to keep. May angels watch me through the night, and wake me with the morning light. Amen"
She's never lets us forget to pray. A typical nights routine is: Brush Ivee's teeth (for 1 minute. We have a timer!) Go potty. Hook her up to the feeding extension line and give her the night time meds. Hook her up to her feeding machine (which feeds her all night long). Prep and give her the growth hormone shot. Pray. Mommy AND daddy must hug and kiss her good night. And lastly, don't forget to play the music!
We will return to St. Jude for her MRI and other appointments at the end of February. I was just telling Emmett the other night, I can always tell when it's getting close. I feel this need, or urge to pack and travel. I guess it is similar to someone who travels for their job once a quarter. You just feel it coming. Of course, you can feel the anxiety trying to creep in as well. It's the little things that set it off. For example, Ivee had a bout of diarrhea this past weekend. Saturday night she was complaining about her neck (where the shunt line is located). I saw nothing and after a little crying spell she was fine. But there was the time, back in 2010 when she had a rare shunt line infection after a stomach virus. The conclusion had been that the virus traveled outside the intestines and traveled along the line to her neck where an infection started in. I am SO very thankful that she is here with us, but please...NEVER think cause the cancer is gone that the worrying or living with the consequences of the cancer is easy. Nothing about it is easy. I just feel incredibly blessed! It could be so much worse than it is. She is a happy little girl, who just lives a not so typical little girl life. Honestly, she doesn't know any different, and sometimes, that makes me sad for her.
Okay, I'm pulling myself away from the pity party! Keep praying my friends! I am so thankful for you. And if you would, please add the following to your prayers as well.
Our friends, Sheila and Jesse. Their husband/dad, Danny, passed away Christmas Eve. It is still a very hard road, and Jesse has health/disabilities (much like Ivee). Danny was a huge help, and now it is just Sheila. And they miss him terribly!
Our pastor, Bobby. He is going through chemo and needs the prayers of God's people for healing!
Carlin, still going strong, but has hard days.
Aaron, going through chemo for new tumor growth. Surgery not an option and radiation has been maxed out.
John, just had surgery to remove a returned brain tumor.
Emmett, yes, Ivee's daddy is having problems with his arm. Pain from elbow to hand. Seeing the doctor Friday.