Friday, September 4, 2009

Update

Please forgive us for the delay in posts. Things have been a little busy around here - good busy. Of course, we've had the standard therapy and doctor visits. Keegan continues to excel in occupational therapy. We are still working on his upper body strength/coordination and balance; we have also begun more intense focus on his visual/fine motor skills (matching pieces, stacking, etc). In feeding therapy, he has not progressed to any new foods, but his skills are showing some improvement (spoon feeding rates about 8-9 months of age now). We've also begun working with a feeding psychologist who is helping teach Gray and me how to work with Keegan at home. He continues to do better for the therapists than for us, but we're told that is expected. It's definitely a different approach than we're used to, but we're anxious to do whatever is necessary to help. One of the first things she explained to us was that Keegan does not understand normal hunger cues due to his medical history. He has no idea what the feeling of hunger means or that eating will make it go away. That concept really gave me some understanding as to why this has been so difficult for him. Again, eating is a learned behavior, and it will come back to him in time. Lastly, in speech therapy, he has begun having baby talk "conversations", which are hysterical! I'll have to get that on video! He still only says "hi", "bye", and "daddy", but he's imitating a few more consonants now. He kind of made the sounds for "mama" this morning in therapy, but he was playing with his cars with the therapist and not even looking my direction. I'm still waiting for that day!

As for doctor visits, we have been to GI twice. Keegan had lost over a pound due to his intestinal problems and a leaking g-button. We switched his button again last week, and he has begun gaining the weight back. Yesterday, his GI doctor said not to make any more changes for at least two weeks. We're not to adjust his tube feeds again until he is completely off the oral antibiotic. His dose will decrease again in two weeks and then be done a month after that if all goes well. We mapped out a plan for what to do if his symptoms get out of hand, and I feel better now that a setback won't mean going all the way back to the beginning. Keegan's liver numbers are still creeping up, but to keep his counts stable, we will check a full panel of liver numbers at his cardiology annual on the 14th. Keegan actually has NO doctor visits, just therapy, scheduled for next week, an early birthday present for him!

This past Tuesday, we did an "in-and-out" stay with Keegan at a local nursing home, the product of a loophole in the program that makes Keegan eligible for Medicaid coverage. The law is written as a "calendar day", so we checked in at 11:45pm and left by 12:15am. It was a small nuisance for the benefit of coverage and nursing care for this winter, except that it screwed up his sleep schedule for at least two days. Medicaid will cover our "third car payment", aka Keegan's formula and allow us to have some of our best nurses from Children's care for Keegan this winter at home so that I can run errands and whatnot during "lock-down" season. Maybe I won't lose my mind this winter afterall!

I have been weighed down lately with worry and anxiety for the many events now approaching - Keegan's second birthday, transplant anniversary, cardiology annual, flu season and "lock-down", etc. Although his birthday and anniversary are blessed events in our lives, they still bring with them plenty of emotions and unpleasant memories, especially as we continue to get to know his amazing donor family. His cardiology annual will be Sept. 14th; he will have labs, chest xray, echo, EKG, bone age scan, cath, and biopsy (and probably a few other things that I forgot). Our biggest concern is his catheterization and heart biopsy - Keegan has never, not here or in Boston, made it out of the cath lab without needing blood. And brilliant mom convinced the hematologist to stop his epogen shots for a month, way to go. We have now been home four months, and I'm not ready to end this streak. Of course, flu season and swine flu are scaring the pants off us too, so it will be a long, long winter in the Harrison household.

I knew my worries and concerns were getting the best of me recently, which in turn made me feel guilty for the other things I was neglecting. I could feel a gentle tug every time my mind would fret to put the problems aside and move on. I prayed, asking God to keep Keegan safe and help him through, to give us strength and health through the winter - but I never gave up that control I sought in my anxiety. Then, as I was driving today, a song called "Let It Fade" by Jeremy Camp came on the radio. (You can hear it HERE.) All of a sudden, that gentle tug became a whap on the side of the head. God has promised that if we let go of those worries, walk in faith, trust in Him, continue to rejoice in the blessings He has given, we will find peace and rest. I live by the promise made that our sufferings are made perfect in Him - Keegan reminds me of that every single day. But I cannot predict what lies in store for our family - not tomorrow or this winter or ten years down the road. If a let that anxiety crush me, I cannot embrace the joy of today. I can't be a good mother, wife, daughter, sister, or friend. I don't need to worry because God is not shaken by what awaits us - He will be there for us to carry us through it.

I apologize for the long post, but it's something that I needed to say. I invite each of you to offer up one of your worries, even if just for today. Ask God to fill that space in your heart, and see what kind of peace you will find. It doesn't mean you'll never worry again - you are human afterall. But if we start to stand on HIS grace, instead of our own two feet, I think the change will be amazing.

"Rejoice in the Lord always; I will say it again - Rejoice!...Do not be anxious about anything, but in everything, by prayer and petition, and with thanksgiving, present your petitions to God. And the peace of God, which transcends all understanding, will guard your hearts and minds in Christ Jesus. Finally, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable - if anything is excellent or praiseworthy - think about such things. Whatever you have learned or received or heard from me or seen in me, put into practice. And the God of peace will be with you." Phillipians 4: 4, 6-9