36 weeks 4 days

Monday was my 36 week appointment, I’ll be going in weekly now. If things are interesting I will blog after each appointment. For this post there is good news, bad news and good news again. The first bit of good news is that as of my appointment I was dilated to a “one” ooowe :)

Specific to CP

The bad news is though that my adductors (thigh muscles) apparently were tight and my OB was concerned that they would be to tight to allow the baby though. It is true though my legs were tighter that day than usual due to needing to go up and down stairs. She then asked me if I thought an epidural would loosen my muscles—I had no idea. Then we started to discuss having a C-section, not my favorite idea because I would like to be pregnant again before the recommended recovery time of 18-23 months. She wanted my adductors evaluated, so the next day I went into the physical therapy clinic to get everything measured. I avoided stairs prior to the appointment but avoided any other special preparation so the measurement would be accurate. The final good news is that the physical therapist’s report stated that he didn’t think I would have a problem opening my legs. He didn’t have an answer about the epidural but that’s okay, no one seems too.

Those of you that read the post concerning my birth plan know that an epidural isn’t my favorite idea because I am fairly prideful about my pain tolerance. I think I’m tougher than most and could cite dozens of reasons why—it’s a bit of a problem. I think though that I will take the epidural on the off chance that it will loosen my muscles and make birthing easier. Even if it doesn’t loosen muscles it may well help avoid additional constriction of my muscles that might be brought on by the inevitable pain. Since I really want to avoid a C-section I don’t want to have any regrets about what I could have done to (potentially) prevent it.

I should mention before I close this post that I am experiencing considerable pain in my hip, knee, and ankle joints. I feel like I’m ripping them apart every time I need to stand or walk up stairs, and I feel that I am crushing them in unnatural directions when I put weight on them. I hope that these things do not cause permanent damage, but what will be, will be.  I’m not scared at this point of another pregnancy, I definitely want to have at least two children. Like I said before siblinghood is very important to me. I however feel that it is necessary to be as honest as possible in expressing my experience. These last few weeks have been very hard on my body.     

33 weeks-- Pain

This last weekend was a very eventful one. My wonderful sister-in-law and niece threw me a Baby Shower (my room is currently stacked high with gifts) and yesterday was my mother-in-law’s birthday party. It was so wonderful to see and spend time with a number of people on that side of the family. However, regrettably, there were consequences to my activity level…

Specific to CP

I’ve known for the last few weeks that the weight from my pregnancy has been causing an undesirable level of pressure on my knees and ankles. Up until this weekend, though, I was able to avoid focusing on the discomfort that it was giving me.

Last night I went to bed in a moderate amount of pain. I tossed and turned for an hour or so before finally being able to fall asleep. At about 2:45am I woke up in severe lower body muscular-skeletal pain. I desperately needed to go to the bathroom but it took me 30 minutes to get the bathroom, even though it was only a few feet away. Once I was back, I tried to lie down again but the least painful position I could find was sitting on the edge of my bed staring out my window. 

I thought and I thought about the mistakes I had made that weekend. The biggest issue, I think were the stairs I had climbed. I tried to think of a solution for the pain but couldn’t think of one. Tylenol is great for breaking a fever but not for taking away pain—I just have to high a tolerance to pain killers, I’ve gone essentially pain medication free since I was a teenager. In my desperation I thought of waking my husband, but the poor man isn’t getting much sleep any more, he is just too busy.

After about an hour my fruitless solution seeking, I did something I hadn’t done in nearly 16 years, I cried due to Cerebral Palsy pain. Of course I have cried several times in the last 16 years for other types of reasons, but CP pain wasn’t one of them (I'm "tough"). My crying turned in to all out weeping and that woke up my husband. He took me in his arms and somehow even though he didn’t take away the severity of my pain, he was able to push it into the background and we were able to fall back to sleep.

I’ve “hit a wall” so to speak, things are becoming more painful and difficult to accomplish. I’ve always been one to push myself from one task to another, but I think it is time to slow down. My goal was to make it to 36 weeks and then put up my feet and neglect everything except good books for my final weeks. I’m not ready to cast aside all my responsibilities yet but hopefully in the next few days I can have enough of my “affairs in order” to keep off my feet most of the time.

30 weeks

Today’s appointment went well, I don’t have gestational diabetes and all my recent blood work looks great, wahoo :) I received my whooping cough vaccine today and it’s made me feel fairly sick so that is a bit of a downside for today. The baby has been very active for the last several weeks, it’s pretty exciting to watch my tummy bounce around like boiling water. He particularly responds to music, namely piano and harmonica music, so I’m assuming that I have a musician inside of me—given his daddy and that side of the family I wouldn’t be surprised at all, if it turns out to be true.  

Specific to CP

There have been some changes in this area. Number one, I’m back to physical therapy. Why? To appease my father-in-law. Apparently he works for a physical therapy office owned and operated by his brother. So, voila! I have free physical therapy, whether I need it or not. So, nothing to complain about.

But alas, I suddenly might need the therapy—I’ve been pushing myself too hard this last week and I’ve hurt my left hip. It hurts to lay down, it hurts to stand,walk, bend, lift…it hurts pretty much to move. Oh, and sitting to long causes my feet to swell up and hurt. So essentially I’m very uncomfortable. But hey! When I go to my physical therapy appointment tomorrow we will have a project to work on. 

26 weeks, 4 days--Q&A

You seem to have had a successful experience falling in love; do you have any dating advice for people with Cerebral Palsy?

Wow, what an intimidating question! As you may be able to tell I’ve been putting off creating a generalized answer that I could post here on the blog. However, this just might be my most popular question, so here is my attempt. Please remember that I am not an expert.

My first bit of advice is to get out of the house and go to where single people are. I know we all have different ability levels and this will be more difficult for some than for others, but when it comes to meeting new people--usually this means getting out of the house. Most of my dating and socializing as a single person came from two sources; church and college. These are two great places to meet eligible and datable people, both with and without disabilities. On top of dating I believe that church and college will foster one’s self identity and progression through life. So even if you don’t meet someone I think you will be a happier person for participating. If church or school are not your “thing” I would recommend joining a organization of “do gooders” and perform service for others—it’s a great place to meet the right sort of person to date and serving next to people helps build relationships and helps people see past your disabilities.

Another big issue with dating is transportation, I have heard people of all ability levels complain that they cannot date because they have no car or cannot drive. To this I can tell you that Matt and I had a 100% “Car-less Courtship” and about 8 months of our 2 year marriage have been car-less as well. I know that public transit isn’t ideal but it is something, don’t discount it.

 Here are another few pointers: 

• When socializing try not to complain about your disabilities; negativity and complaining aren't very attractive. If you need to mention something say that you would have difficulty with this or that activity, and try to say it with a smile on your face. 
• I think that is excellent to expect high standards from the people you date but also set high standards for yourself too. Be a person you would want to date. 
• And finally remember that it’s okay to be single, you can be very happy as a single person. Don’t settle for dating someone that demeans your ability level just because you don’t want to be alone. Besides being a happy single person is very attractive.

Do you have a birth plan?

Yes and no. There is a lot in how CP will affect my delivery that I don’t know, so I need to be flexible. Here are some of my thoughts. 

“Ideally” I’d like to deliver this baby naturally, aka no pain meds. I know this might be nothing but vanity on my part but after 6 osteotomies (where your bone is sawn in half and rotated) I figure that I can handle pain just fine. Pain tolerance is simply part of my identity so I don’t want to feel weak. Also of course, I have the same arguments against epidurals many other women have. I don’t want to give myself unnecessary medication and put the child in danger or distress. My doctor has suggested, though, that an epidural may reduce my spasticity. I’ve heard of woman with CP in labor for hours (30 hrs plus) and not being able to deliver due to spasticity, resulting in emergencies. If an epidural really would loosen my muscles and make delivery less dangerous I cannot let my pride get in the way. For now though I’m not convinced it really would loosen my muscles—if any of you have had an experience related to this, please let me know.

I would prefer to not have a C-section but I am not opposed either, under the right circumstances. If we decide that my pelvis is too tight to deliver, I am in favor of a planned C-section and avoiding any distress to the baby. Since I want to deliver vaginally so much the doctor has suggested that we could try and deliver vaginally but have a shorter time limit before moving to the operating room. I am most comfortable with this suggestion.

I am VERY opposed to an induction with my CP. Pitocin will increase distress on my baby and my tight pelvis will too. I will NOT put my child in that situation. If there is any suggestion of it I will schedule a C-section and skip all the inevitable trauma to my child.

So those are my thoughts so far—but admittedly I still have a lot to learn.

24 weeks 4 days

Well I am 6 months pregnant and still going strong! The baby as far as we can tell is healthy and strong, I’m healthy and the pregnancy seems to be progressing without a hitch. I'm feeling the baby move now which is very exciting :)

My OB has been a little concerned about my delivery.  I went yesterday to “delivery counseling” at a specialized hospital in regard to my heart. I had told her prior to this that my cardiologist had already cleared me for delivery and I had released those records to her—but a second opinion is always good. So, it wasn’t a surprise when this doctor told me that my PFO should not interfere with delivering vaginally. Of course CP could make delivery very difficult and I may end up with a C-section any way, but let’s take things one at a time.

Specific to CP

I am still active and mobile although I am exhausted ALL the time. I still am walking 2.5 miles every morning, although, by October I plan on cutting back. Someday's I do very well and others are complete torture—I don’t want to hurt myself, I am going to try and make prudent choices regarding my exercise. I’m really surprised I’ve made it this far and I believe that my walks are the number one reason I am still able to walk at this later stage in pregnancy.

My ankles are doing better and have stopped hurting and giving out. I did choose to stop physical therapy due to both the cost and quality of care that I was receiving. I am grateful for the tools and exercises received on my first visit, though, and credit that in part  for my current success.

A moderately boring post I know… but the good news is that, that is good news! I’m an exhausted woman with CP carrying a pregnancy better than expected. I hope that my boring posts can give HOPE to other woman with CP curious about pregnancy.

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Next time I’ll have a Q&A post where I will answer a question about dating (the last Q&A brought about several questions on this subject) and I will be discussing my “birthing plan.”  Remember you can contact me at IhaveCP@gmail.com.

20 weeks

Wahoo! I’ve hit the halfway point! Just to let you know, the pregnancy is going well, the baby’s development is right on track and if it weren’t for CP I don’t think I’d have any complaints.

Specific to CP

Starting 2 or 3 weeks ago I started having some problems with my ankles giving out and increased lower leg pain. I discussed this with my doctor at my last appointment and she suggested starting physical therapy, an idea I was very in favor of. She wrote me a prescription for an associated office and my first appointment was yesterday.

I really miss the days of receiving physical therapy services at the hospital where I had my surgeries and receiving specialized cerebral palsy care. Now I have to sit and explain my surgeries and spasticity to people with eyes popping out of their heads. “Yes I am sure that I am an interesting case to you.” I cannot complain to much though, I really feel that I received the care and recommendations that I desired.

The biggest obstacle I face now is the cost of the therapy. Ever since leaving the office I’ve been trying to wrap my head around it and find solutions. I’m forced to analyze my need verses my pocketbook—I’m wishing now that I hadn’t made a complaint until week 30 or perhaps I should make physical therapy priority during my postpartum rehabilitation and simply opt-out of it for the duration of my pregnancy. All of these thoughts also spark thoughts of my middle and late adulthood and how find to affordable care for that time of my life.

No, I am not “pining” over this issue I’m sure that my husband and I can find the right solution, I’ve always been able to take care of my body. I am thinking that I will take and use the information from the PT, then opt for a gym membership where I could have access occasionally to personal trainers for the duration of my pregnancy. (The gym has always served me well.) Then start physical therapy again after my child is born and physically I am at a very low point.

I can imagine medical professionals shaking their heads at me and other persons with cerebral palsy nodding (I know others have made similar choices.) Please understand that I am not complaining, making a statement on the country’s health care, or asking anything from anyone. I am writing my reflections here, because if you or someone you love is a woman with spastic diplegic cerebral palsy considering pregnancy this is something you will likely need to think about too. I will keep you updated on my choices on this subject.

18 weeks

Its a boy!