Saturday, October 21, 2006


Greetings! It's been some time since the last update and that is b/c a lot has been going on. Emily has been pretty sick and we are not quite sure why... and neither are the doctors that we discuss these things with. She has two teeth coming in, so that makes for a lot of secretions and pain, but she has also had blood in her stomach and she has thrown up again. She continues to have a lot of gas and we've tried various medicines to help with some of these things. B/c of her condition we are not making this next trip to Salt Lake City which means we probably will not be going out there at all anymore. That means that we are no longer a part of the study and Emily is no longer eligible for PBA. That means that we either have to get into a study closer to home that can provide that medicine or we can try another medicine, VPA, that has had success with SMA kids. We are still not sure what to do about the medicine, but the reality is that if Emily is not on something all of her voluntary muscles will likely weaken so fast that she would not live very long at all. It would be a tragic downfall I'd guess.
The thing is, I don't know how long we can keep doing this. Emily had Diana up almost nonstop last night and I was up many times as well. We get a few hours of sleep every night b/c she is coughing, needs her feeds, needs to be turned over, etc, etc. We have inquired about "skilled nursing," but our insurance will not cover hospice expenses AND skilled nursing at the same time. We get out equipment through hospice, so we can't cancel that, but we can't continue getting NO sleep either. Not sure what to do about that. Lots to think about.

SO -- It has been brought up, by someone that I love dearly, that these posts do not entirely capture what life is like, at least from my perspective. I have to agree. For two main reasons I have kept these posts on the lighter side:
1. I feel a responsibility to not depress people with my antics, b/c they can be heavy, depressing, and wild at times. :)
2. When I sit down to type it is nearly impossible to put down in words how I feel at times. Usually when I sit down I am just trying to report. Although everything I type is from my heart, it is not always the entire picture. I hope you can all understand that.

Therefore -- I will divulge a bit so you can understand the bigger picture.

MANY people want to encourage us in our situation and that is Biblical and right and everything else. We should all do our best to be an encouragement to others that are suffering in one way or another. Right now we are having meals brought to us every few days and IT IS INCREDIBLE! Our friends and church members (who are also friends) are showing incredible selflessness as they care for us, the wounded. I feel wounded.

Aside from the incredible things that people do for us, and aside from the VERY important friendships that have developed over the past couple of years here in MD.... almost every day someone will make this comment: "Things will get better." Bull Sh^*. I am sorry, but God does not promise that anything will get better. Gazillions of people die in pain. Linnea died in pain except for the Morphine that gave her. Linnea's life did not "get better." There are times that we may feel equipped to endure some sort of pain be it mental, spiritual, physical, etc... but should we expect things to get better? Is that really faithfulness? God's intentions may be for us to suffer some string of tragedies until the day we die b/c He deems that to be more useful in His plan then excusing us from tragedy and suffering. That is more probable to me b/c we live to serve Him, however He wants us to serve. God wants us to serve him by living through the death of our children. He expects us to stick to it in our marriage even though we are tired, hurt, grieved, and can't get a long a lot of the time. I do believe that we can gain strength from the Lord in this and he DOES promise to give us the strength to endure it... but, if when people say that they mean "God will give you the strength and it will seem as though things are better b/c your relationship with Him is better," then I could agree, but I don't think that is what people are saying. Also, "God must be preparing you for something big." Well maybe he isn't. Maybe we are suffering so Annabelle can do "something big" with her life and we are just the stepping stones for the great way God will use Annabelle and it will really suck for us. Seriously, why couldn't it be that? Maybe God wants our marriage to be as difficult as it is b/c our constant need to work through things is a better witness to the people God puts in our life than a marriage where things are great most of the time. BTW -- I had a great conversation with a friend about how we are "so strong in the midst of this." I encouraged him to understand that if he sees strength it is b/c he sees Jesus, not us. It is hard to capture my thoughts on this in writing, but..... when I feel weak and rung out, I see how God is using us to infect other peoples lives. I don't want to feel weak all the time, but I do want to see how God is using us for His glory and to "further the Kingdom." I just feel all a mess most of the time. That does NOT, however, mean that I doubt God's goodness, or I curse Him, or anything of the sort. It just means that I am still learning how to deal with the responsibility that God has given me and us.

OKOK -- I don't know if I should keep on typing this. I want everyone to know that we DO feel encouraged by you and we DO appreciate your goodness to us. It gets fuzzy for me when I experience the meaning that others want to attach to our life. I want to serve the Lord b/c I want to serve Him, not b/c I think things will get better or b/c there is some big plan in our future that will make all of this seem worth it. We already think that this is "worth it," but that doesn't really make it less confusing. It's confusing b/c a lot of the time we just don't want it to be real anymore. We want it to all fade away like a bad dream... but it won't and we are learning to live with that every day. I think we will always be learning to live with it every day. The events of our lives are the ones that you want to forget, but you hope you never will. It's like what overcompulsiveness would be like spiritually I guess. We want it to stop, but it can't... but only b/c in the end, it is good.

Monday, October 02, 2006

Troubling Times

Hello faithful readers. This post may be a reality check to some, but a reminder to others. Emily has SMA and her body suffers the effects of it every day. However, the issues below are not normal. Here is an email I wrote to our Doctors about our recent weeks. Often we find ourselves just not knowing what to do.   

Good day!  We are hoping to get some thoughts about Emily and a recurring problem we are having with her... blood coming out of her stomach when we burp her via her G-tube.  

  We have brought this up before and surmised that there was a ulcer type issue in her G-tube track so we have been giving her Prevacid.  Over the last week we have had a VERY difficult time with Emily having loads of air in her stomach at various times, not necessarily associated with using her BiPap.  We have been giving her gas drops for a couple of days now and it seems to be a bit better, things are still not good and she is uncomfortable.  Last weekend I heard her crying in the middle of the night and found that her stomach was severely distended and hooked her up to burp her.  She was in obvious pain and was getting very "junky" in the process.  I burped her, got everything out, and she went back to sleep.  About 15 mins later she was crying real hard again so I hooked her to burp more... then she started throwing up... I'm talking out of her mouth.  Also, the 30cc syringe that I was using to burp her was overflowing b/c of the amount of air pushing the milk out.  I got her suctioned out and burped and she went back to sleep.  This gas problem has continued through this past week and this weekend.

So, this past Friday night she was crying again and we started to vent her again, but this time a lot of air, stomach acid, and blood clots came out.  Not just a few little spots of blood, but quite a few trails of thick coagulated blood. That was all that we saw of it though. Could this have been a result of her instense gas that caused her to throw up? Could she have ripped her Nissan or something?

She doesn't have a fever, although she has had a lot of secretions and is on Omniceph as of Fri for an apparent infection.

We can't figure out what this could be.  Do we need to get some sort of scan done to see if she has an ulcer problem or something else in her stomach?  Is the various medication she is on causing acidity problems in her stomach?  I have strange stomach issues, so maybe she does too.  ??  Her stomach gas/pain causes more secretions which means she is even more susceptible to respiratory issues during this cold season, so we are hoping to figure something out so she can go back to being her happy Emily self.

Thanks for your time! :)