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NCHPAD - Building Healthy Inclusive Communities

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A Mom with Spastic Cerebral Palsy Welcomes Another Pregnancy!


My name is Ginni Buller, I am 36 years old, and I have mild spastic cerebral palsy (CP). I am married to a wonderful man and have 2 children: Edward, born in November of 2008 and Sarah in 2005. A few years ago, I authored an article for NCPAD, 'First Time Mom with Spastic Cerebral Palsy' (http://www.ncpad.org/425/2253/Community~Voice~~First-Time~Mom~with~Spastic~Cerebral~Palsy), sharing the story of my first pregnancy. That article described how I used physical activity to prepare for a healthy pregnancy with my daughter Sarah, who now is almost 4 years old.

I am a stay-at-home-mom. My husband and I decided to have another child because we wanted a sibling for Sarah but also because we wanted to have another child to love and raise. I would like to share with you my life as a mother of two, who happens to have cerebral palsy.

Ginni with her husband and two children
Ginni with her husband and two children
I have had mild CP all of my life. I was diagnosed with CP when I was 18 months old and had physical and occupational therapy throughout my childhood until I was 12 or 13 years old. I live a full, productive, and healthy life. My CP affects my balance and causes tight muscles, finger dexterity issues, and a slight speech impediment. I walk without assistance, but with a slight limp on the right side. CP is just a physical entity that I have had to deal with since day one. Limitations are few and far between because I have learned to adapt. Actually, my CP has made me into the person I am today. CP has given me qualities that I don't know if I would have had otherwise. In fact, these qualities benefit my life and will be passed down to my family.

To get ready for my second pregnancy, I started physical training in January of 2008 with a personal trainer at a gym. I chose to work out with a trainer instead of having physical therapy. I researched having a personal trainer as well as physical therapy and decided that having a personal trainer would offer the same benefits as physical therapy (and be less expensive). I chose my trainer because he had some experience working with people with physical problems in clinical settings. When I spoke with him regarding personally training me, I shared that I was trying to get pregnant. I told him my goals, which were to be physically fit and to prepare for my anticipated pregnancy. Specifically, I wanted to work on loosening my muscles and increasing my range of motion and flexibility. If I do not exercise for long periods of time, I experience an increase of tightening muscle tone and spasticity. Consequently, we scheduled 1-hour training sessions 3 times per week. My trainer, Joe, has written his perspective on how he developed my exercise program:

'My name is Joseph Trout and I am Ginni Buller's personal trainer. I began training Ginni on January 7, 2008. At the gym, Ginni inquired about having a personal trainer to assist her with stretching, balance, and resistance training. I wanted to incorporate all the necessary exercises with consideration of her spastic CP so that she could achieve her optimum functional ability. Initially, I had concerns as to how I could assist Ginni and as to how much progress would be accomplished with CP. However, as we began training, it was clear that Ginni's determination and drive would overcome any obstacle that her CP would present. I soon realized that no matter what exercise I planned for Ginni, she was going to do it regardless of the challenges that beset her. At one point I promised Ginni that she would be able to walk up and down stairs without using the railing, to which she responded, 'Yeah, right,' but with motivation and hard work, she kept pushing herself until she eventually did accomplish the goal we had set....even with the additional weight of her pregnancy.

A personal trainer assists a woman in two different lower body stretches
Joseph and Ginni work on increasing flexibility
Throughout the training program that we developed, range of motion was a pivotal focus. Stretching was a priority at every session because spastic cerebral palsy causes every muscle in Ginni's body to be extremely tight. Ginni's workout began with a moderate warm-up on the cardiovascular machines, involving walking, elliptical, or striding. We would then progress to static stretching, which would start with the hamstring stretch while Ginni laid on her back, and then the quad stretch, with Ginni lying on her side while I assisted with stretching the muscles. We also used weight machines as assistance to gain a more efficient stretch. One of the machines we often used was the bicep curl machine to stretch her tight brachioradialis, flexor carpi radialis, and palmaris longus muscles, which are the forearm muscles. We also used the hip adductor machine. On this machine, I would set the leg adjustment out wide enough for Ginni to feel a significant stretch in her adductor longus, gracilis, and pectineus, which are the inner thigh muscles. The seated gastroc stretch with a towel and the butterfly stretch were also incorporated into our flexibility training.

Resistance training was done consistently with Ginni. We would target each major muscle group that Ginni had trouble with and pay special attention to the weaker muscles. For example, the right leg is significantly weaker than the left leg, particularly in the calf. So we would still work both legs, but Ginni would also perform single leg presses or single leg extensions and calf raises to help balance strength in both legs. We would also perform exercises standing on one foot which would not only strengthen the legs but also work on Ginni's proprioception and balance.

Another important role of our resistance training was to strengthen the muscles that work as antagonists to the tighter muscles. For example, Ginni's biceps and brachioradialis muscles of the forearm are extremely tight, particularly in the left arm, causing slight elbow flexion. To help Ginni gain full extension in the left arm, she would do tricep extensions. This would tighten the triceps pulling her left forearm back with hope of gaining more range of motion for extending her left elbow. This also applied to her ankles. I would work on the soleus (calf) muscles and anterior tibialis (front lower leg) to try and regulate the compensation among her joints and muscles.

As far as our training went, Ginni was one of a kind. We relentlessly concentrated on the spasticity of the muscles and how each exercise affected her cerebral palsy, paying special attention to the underactive and overactive muscles in order to help correct flexibility imbalances and function. Ginni's persistence and determination was an inspiration for anyone. Regardless of the challenges Ginni experienced each day, she continued to work hard and overcame the odds.'

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A woman with cerebral palsy poses with her male personal trainer.
Ginni and Joseph
After my training session with Joe, I would continue exercising another hour, doing even more stretching and strengthening exercises, completing the exercises that I could not finish in our 1-hour personal training session.

On St. Patrick's Day of 2008, I found out I was pregnant! I took a digital home pregnancy test late that night when everybody was in bed. I was kind of shocked when it said, 'Pregnant,' because I wasn't having any symptoms of pregnancy. The next day, after another positive test, I gave Sarah the book, God Gave Us Two, and suggested that she ask her dad to read it to her. It took a little while, but he finally got the hint . . . . he was going to be a father again! We told our families and friends a month later. They were so happy for us - it was a memorable moment!

In addition to being physically active, I also had to carefully watch my diabetes, as I have type 1, insulin-dependent diabetes. Diabetics can have healthy and successful pregnancies, as new technology has given us sharper knowledge and medical devices that actually act as a pancreas (insulin pumps). I've been on a pump since 2004 and have had much success with it. I would not have gotten pregnant, nor controlled my blood sugars so well during pregnancy, without one. A non-diabetic and non-pregnant individual's blood sugar ranges from 70 to 100, and even higher after eating. Diabetics' sugars can be all over the place due to the pancreas not working properly. But during pregnancy, a hormone that tends to make blood sugars very sporadic is released creating even more opportunity for large spikes and dramatic lows in blood sugar. When I first got pregnant, I would run in the 200's easily, so I had to get used to aggressively adjusting my pump. With insulin adjustments, I got control of my blood sugars and with meticulous attention, I was able to control my blood sugars during my entire pregnancy, averaging scores of 80 throughout. This is a huge accomplishment for any diabetic.

Hemoglobin A1C's are an average of 3 months worth of blood sugars. People without diabetes usually run in the range of 3.5 to a 4.9, sometimes higher. I was in great control when I became pregnant, with a HA1C of a 4.9. I watched my sugars very attentively, checking my sugars hourly most of the time.

Though a key goal of being diabetic and pregnant is to maintain level sugars, I certainly had my share of highs, as well as low, sugars. A diabetic woman who wants to get pregnant needs to know that having sporadic highs will not hurt the baby as long as you check sugars hourly, since those highs won't be high for long. If they aren't high for long periods of time (days), then the baby will be fine. When my third trimester came around, my HA1C had dropped to 3.9, with my average blood sugar reading still being 80. My endocrinologist was amazed because I was the first person he had ever known to get down to a 3.9. I really can't explain how it kept dropping, except for the consistency of checking and maintaining my sugars level.

Pregnancy also had an effect on falling. Since this was our second successful pregnancy, I began to show sooner. When I was 14 weeks, I physically felt closer to 20 weeks. While I did fall more during my second pregnancy, I felt the falls were mainly due to general anxiety which in turn tightened up my muscles even more. I did occasionally take medication, Flexerill, when leaving home. Flexerill is safe during pregnancy and would help loosen up my muscles. My falls were nothing serious or ones that would threaten the baby in any way. I learned to help prevent falls, mainly by concentrating on relaxing. If I could relax myself mentally, then physically, I did not have a problem. I did take more precautions with my second pregnancy and asked for a helping hand when needed.

When I was 18-1/2 weeks pregnant, Kevin, Sarah, and I went for a routine sonogram. The tech asked if we'd like to know the sex of our little one. With anticipation and without hesitation, we said, 'Yes!' It wasn't too long after she had started the ultrasound that she announced we were having a boy! Miss Sarah was going to have a little brother and we were going to have a son! Once again, Kevin and I were on cloud nine.

Ginni and her husband are posing together, showing excitement about Ginni’s pregnancy.
Ginni and her husband
As time went on and my stomach grew, exercising and stretching became more challenging. I would stretch before exercising, lying down flat to do most of the stretches. Whenever Joe would lift my legs up to stretch my hamstrings, I'd get out of breath easily. We found out that if I laid down on an incline, using one of the weight benches, it was easier. It was noticeable to both Joe and me that my hamstrings became tighter later in my pregnancy because of the weight I gained. My muscles had to work harder to carry the baby, therefore constricted more, making my muscles tighter. Most of my weight gain was limited to my abdominal area. My center of gravity was not affected that much, but I could tell a difference and had to watch more closely when I got up to walk in my 8th and 9th months of pregnancy. I made sure my walkway was clear, wherever I was. If the walkway was not clear, I would ask for a helping hand for preventive measures.

My expected due date was November 25, 2008. I was getting biophysical sonograms done, which is where they measured our little boy to give an estimated weight and checked to see if he was practicing breathing, It also checks to see how much amniotic fluid is in there. I was doing this weekly starting at 35 weeks. I also started Non-Stress Tests (NSTs) then as well which look at the heart rate of the moving baby. If the heart rate increases each time he moves, then the baby is doing just fine. Our son did extremely well on these tests and scored as high as he could score.

I had a different birth plan for our second experience. With Sarah, I was induced with Pitocin (to bring on contractions) and had an epidural. Sarah had trouble breastfeeding from the start. I had researched and found out the less medicine I used, the better chances I had of the baby breastfeeding well. I was praying that I would go into labor on my own so I wouldn't need any medicine to bring on the contractions. I wanted to breastfeed my son soon after delivery, especially since they are most awake in that first hour after birth. I didn't breastfeed Sarah until over an hour had passed. I read to refresh myself on how to breastfeed and how to help the baby breastfeed well. In the back of my mind, I was wondering if my finger dexterity would be an issue. I contacted the La Leche League (breastfeeding group) for help. I met with a woman from the League before our son was born so I could be ready and prepare. She came to my house and reviewed breastfeeding as well as answered my questions. After our meeting, I felt ready and confident that the breastfeeding would go smoothly.

On November 9, 2008, at 2:55 a.m., I was awakened by cramping. I soon realized that these weren't cramps, they were contractions! Kevin was working nights, so I called him on his cell phone, saying he needed to come home because I was in labor. I called my parents, and they rushed over to be with Sarah as Kevin and I left for the hospital. The hospital was an hour away and the contractions were 2 to 3 minutes apart. I was very uncomfortable when we FINALLY got there. Once I had been situated in our room, the nurse checked and I was dilated to 7 centimeters. I got an epidural and that helped me have some time to relax and be without pain for a little bit. It was 7:45 a.m.when I was fully dilated. The epidural had worn off and I could feel the contractions. Yes, they hurt pretty bad, but it really helped me to push when I could feel the contractions. At 9:34 a.m., Mr. Edward Leland Buller made his debut into this world! He weighed 7 lbs., 3-1/2 oz., and was 20 -1/2 inches long. His Apgar scores were 8 out of 10 because his feet were a bit blue. Five minutes later, they did it again and he scored 9 out of 10. They did watch him for the first hour because his respiration was a little higher than they wanted it to be. After an hour, his respiration numbers were back down to normal. The medical team explained to me he had higher numbers due to the vaginal delivery.

After the delivery, we saved the cord blood. Kevin and I strongly believe that, in the future, stem cells will be able to help improve or cure diseases. If stem-cell therapy becomes available for diabetes or adult cerebral palsy patients, I'll be one of the first to have them. We really believe that stem cells will help us in so many ways in the future. It's also a comfort to us that IF one of our children develops an illness, their stem cells could help them tremendously. It's nice to know that we have a backup plan if we need one.

As soon as the nurses brought Edward to me, I was amazed and overjoyed with the sight of our perfect son. I was so thankful that God had blessed us with another perfect child! I started breastfeeding him right away. What a huge relief it was when he latched on without any trouble. The lactation consultant was there with me and she was astonished at how well he was feeding. I never needed help from the consultant because of how well he was doing at each of the feedings! Three days later, we both were released from the hospital with a great bill of health.

Taking care of two little ones is a chore and can be hectic at times. I think that every new mom of two, CP or not, would say the same thing! Taking care of Edward and Sarah is very rewarding in itself. I enjoy being a mom to two wonderful children. Yes, having CP can complicate things to a degree, and I accept that. I always adapt to what is awkward for me and develop better ways to accomplish tasks.

A newborn baby and his sister
Edward and Sarah
When I take Edward for outings, I always use a stroller to insure his safety. Sarah walks beside me, holding on to either the stroller or my pocketbook. Sarah has always listened to me when we are out. She has never run from me. When I go to a store, I park next to where the carts are kept, and I bring a cart to our van and help her get in it. I've never felt comfortable with letting her walk from the parking lot to the store. She always gets in the cart unless someone else is with me, as a safety precaution.

Edward is now 4-1/2 months old and weighs a healthy 20 pounds. Carrying him anywhere in his car seat is very awkward for me. Edward and the car seat combined are about a bulky 35 pounds.

Another awkward task is putting him in and out of the jumper. I've learned, from having the same issue with Sarah, that I need to have my feet wide apart with one foot against something. Maneuvering Edward this way gives me certainty that I won't lose my balance.

Ginni places Edward into his swing at home.
Ginni and Edward at home
Bathing him could be another somewhat difficult task, but it's not, as I bathe him along with Sarah and me. Kevin will get him ready for a bath and then hand him to me. I hold him on my lap and wash him with the free arm I have. After he is bathed, Kevin whisks him away to dress him. I proceed to help Sarah along, washing her hair and playing with her. After she gets out, I find a little time for myself, which is always nice.

After starting back to the gym when Edward was 6 months old, I am currently 6 pounds away from my pre-pregnancy weight and have lost inches in various areas, including my waist. I am actually smaller around the waist than before I got pregnant! I am still working with Joe and truly believe that exercise makes me feel better. I feel healthy, and my muscles feel looser. I continue to stretch and strengthen my muscles, as this strengthens the mom in me and allows me to extend my productiveness with my children as well.

I love being a mom to two precious children. A lot of people stare at me and wonder. I wish I could be heard and understood that for me, CP is just a physical problem. I am not inept in any way. I am like everyone else in every way except physically. I will always stay true to myself and be the best mom and wife I can be. That's why I wrote this article, in hopes of enlightening and educating people. My hope is for people to realize that people with physical disabilities are people who can and do live full and productive lives.

I would like to publicly thank my husband, Kevin, for loving me the way I am. Thank you for believing in me. Thank you for your dedication to me and our family. I love you, Kevin, and the family we have created! I'm so blessed to have you.

I also want to thank my family for all the love and support I've had all these years. Thank you for raising me like you did. Thank you for pushing me forward and believing in me. You helped me get to where I am today. Without you, I would hate to think where I'd be. I love you guys!

I want to give a big thank-you to Joe Trout, my personal trainer, who believes in me and helps me strive to better myself physically. I could not have done it without you!

 


Please send any questions or comments to Ginni Buller at ginni_buller@yahoo.com.

Ginni now has a Facebook group called, "Mommies with CP."  If any woman is planning on having children within two years OR if one is a mother, please feel free to join the group.  Please answer the three questions in order to become a member.


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