A Not So Fun 4th and Tough Week for Faith

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The other day Faith and I were standing in line at the pharmacy, and someone asked her, "How was your 4th of July?" She responded quite honestly, "Terrible!"  Yes, it was definitely not a very fun 4th. In fact, this whole week has been one challenge after another. The only thing we really did for the 4th was go to Art in the Park in Mandan, which was last Friday. Faith found a new tie-dye t-shirt, and I enjoyed a yummy root beer float.  Art in the Park in Mandan on the 3rd I had actually gone with the goal of getting an Indian taco, but it was so humid, I didn't feel like eating anything hot. Because it was so warm, we only stayed for an hour before heading back to Bismarck. That night, I noticed that Faith seemed uncomfortable in her chair, almost like she was having pain. She told me she needed to get out and lie down. I thought maybe being out in the high humidity had been too much for her or that she was having muscle spasms. After she lay down for a bit...
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Two 'B' Words that are Causing Me Emotional Stress

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There are two 'B' words that are constantly on my mind and are causing me some serious emotional strain. Briefs and Baclofen. 

You may wonder what's the big deal about briefs. Well, it is a big deal when your child is 7 years old and has to wear these large plastic diaper like products that resemble a small garbage bag and seem very uncomfortable. Since Faith has been growing (I know that's a good thing) she has finally outgrown her size six diapers which is the largest size they make.

She really doesn't seem to mind them but it pains me each time I put her in one. Briefs seem so much more final than diapers - like she will be wearing them forever and I don't know if I'll ever be able to accept that.

We haven't ever really worked on potty training. We don't even know if it is a reality because she may not be able to control her bladder. But now because of these briefs and my dislike for them, that is something I really want to start working on with her this summer. There is a catch though - it's hard to hold her up there on the toilet so we would need to get an adaptive positioning seat that goes over the toilet so that she would have support while sitting up going to the bathroom.

I think if she was able to do it, she would feel like such a big girl and would be so proud of herself. And if not, I will have to accept that fact and get used to the briefs. I have hope though because I know of other kids with cp who haven't been potty trained until they were 8 years and older.

Now, about baclofen. This is something we have known for some time that is coming. Because of Faith's high tone, it has been recommended that she get a baclofen pump. This is no easy decision. It is a full-blown surgery and she would be in the hospital for more than a couple of days. 

Her doctors are hoping that with this pump inserted into her body, it would help decrease her tone and help her be more functional. It might make it easier for her to walk in her gait trainer and possibly make it easier for her to feed herself.

The pump itself would be inserted just under her skin near her abdomen. It would kind of be like my pacemaker except larger. The pump would then administer baclofen to her spine to help relax her muscles. It may ease her discomfort and allow her to sleep better at night.

It all sounds good but scary as well. There's the thought of getting the medicine refilled and constantly monitoring her baclofen levels. There is also not a lot of trained professionals in this area who deal with these pumps. Of course, the doctors and therapists are all totally on board, but it is hard when it is your own daughter. What if something goes wrong? What if she gets an infection from it? What if, what if...

We do have the opportunity to get a test dose administered so we can see how the baclofen affects her. If it seems like it would be a good thing for her, we would then set things up for her surgery. With the test dose, they would have to inject it directly into her spine and it would be good for 24 hours.

What a huge decision! We have known some kids with the pump who got theirs later in life and think it is one of the best things that have ever happened to them and wish they would have done it sooner. But we also know of parents who have had concerns after their child got the pump inserted and also know parents who hesitate for their kids to get the baclofen pump inserted.

So there you have it - two 'B' words that are weighing heavily on my mind these days. I'm thankful to have other parents to talk to and know of other children who have gone some of these same issues. I'm also thankful that I know the all-knowing Lord will help us make the right decisions.

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