09.05.13

Is it really September already!? 

Once again, I've fallen behind on the updates, so here goes with a brief version of the last 2+ months...

Hannah is proving to be the teacher of all things 'patience'. She really has had a rough couple of months, beginning with a diagnosis of (and completely unrelated to her genetic conditions) cyclic vomiting syndrome. After about half of the summer in the hospital, doctors labeled Hannah's sleeping/retching/overall miserableness on cyclic vomiting- which basically meant that there was nothing we could do about it. When I asked about ways to treat this, the answer was to try an allergy med that is often used in conjunction with treating migraines (as cyclic vomiting is a migraine variant). When I asked about a timeline for the length of time we might be dealing with this, the answer was, 'Well it could last two years, it could last seven years.' Because of the risk of Hannah increasing the damage to her lung with vomiting, we decided to switch to a gj-tube. This tube allows us to completely bypass Hannah's belly and feed directly into her intestine.

At first, we thought, 'Ok. We can deal with this.' Initially, Hannah was down-cycling on schedule every 2- 2.5 weeks until July when everything got messy. Since then, we've not had much 'cycle' as to when Hannah will be good or bad, or a sign that bad is coming. And that means more tests. 

Last week, Hannah and I made a day trip to Mayo for an MRI. The team did not want to wait for our routine follow-ups to rule out brain swelling or fluid build up that could have caused the most recent problems. Good news. They didn't find anything of the sort. 

We continue to try different things, changing feeding times, using the j-tube side, a different allergy med, and most of all- lots of good prayers from our support system. This coming week we head back to Mayo for more tests and -hopefully- an answer or two.

For me, Hannah not feeling well has been the most trying piece we've dealt with. But, it just goes to show, that the Man upstairs is listening. Each time I have a down day, God steps in by using those around me to say 'Just hang in there.' I am continually blessed with a note from an old teacher reminding me to look for God's small miracles, by a card from a prayer group that reads, 'We know what you are going through,' and by the song on the radio that says I don't have to take this journey alone. I should not be surprised by this reassurance, but I am always in awe of His presence when I seem to need it most.

One last thing. A few weeks ago, my Grandpa passed away. This man was amazing. I wish that words could explain the love he had for his grandchildren and great-grandchildren. When I reflect on memories, I keep circling back to a picture of grandpa holding Hannah and crying over her. If you wonder what selfless love looks like, you need only to think of that image.