I have been writing and rewriting this post in my head for almost 2 weeks now. I knew I wanted to write about it because as any parent knows over time details fade. I knew that I needed to get this down on paper before I blink and my children are grown and this is just a distant memory. Also, my incoherent rambling in a weird way helps me. Consider that your warning, if you are not in the mood to read my rambling feel free to stop reading now. I cannot guarantee that this post will make complete sense nor will it always have proper grammar/punctuation.
Ok, here we go. On February 1, 2013 we took Camryn to Dr. Donovan in Omaha. She has been seeing a urologist in Hastings since June 2011 and we decided it was time to see a pediatric urologist to try to get more answers. He didn't see any major issues and said he wouldn't have done much as far as medication until she was 6 so he wanted to see her back in a few months. He did however notice a very small dimple near the top of her butt and decided to have her stop for a quick x-ray before leaving. He didn't really give us a lot of information he just simply said that he wanted to rule out any problems with her back.
On Feb 7th I received a phone call from one of Dr. Donovan's nurses saying that Camryn had a condition known as Spina Bifida Occulta. She caught me COMPLETELY off-guard. I always thought there was more the the problem but Spina Bifida had NEVER crossed my mind!! She explained that there were 2 places in Camryn's spine that had not fused correctly and that Dr Donovan wanted an MRI done to see more.
February 19th, we returned to Children's Hospital in Omaha for the MRI.
The last couple weeks have given me plenty of time to think, research, and worry. It has also given me plenty of time to realize all of the reasons I have to be thankful. We have so many things to be thankful for, including an amazing children's hospital that isn't too terribly far away and some incredible people who want to help financially. Of all of the things we have to be thankful for there are three that have really stood out to me these last 2 weeks.
#3~ We Finally Have An Answer!
I have known for more than 3 years (almost 4!) that something was not right about Camryn's inability to potty train completely. Before Elody was born (Camryn was around 18 months) she wanted to start trying to use a toilet. I knew it wouldn't happen that young and I didn't push it with a new baby about to arrive but we tried to let her use the toilet as often as possible. Between the ages of 2 and 3 she really wanted to potty train but always seemed to be wet. By the time she was three I knew something was not normal but the Dr continued to tell us that some kids just don't get it that young and to keep trying. It seemed as though everyone had an opinion on this and we were told all kinds of things to try; use pull-ups, don't use pull-ups, use sticker charts, do timed urination (even every 1/2 hour wasn't often enough), let her run around with no underwear or pants, etc, etc, etc. We tried everything possible and nothing worked. As time went on not only did it seem like nothing would work it also became obvious that nobody believed us that this was a real problem. People started saying things like "oh, she still has accidents?" or "Just take her more often..."
At her 4 year checkup I demanded to do something more. The P.A. Camryn sees consulted with a doctor and they decided she needed to see a "behavior specialist" aka child psychologist. As parents we KNEW this was not a behavior, trust me she has many behavior issues but this was NOT one of them!! Again, nobody believed us so we took it upon ourselves to make an appointment with a urologist. He immediately said he thought she had a problem but didn't think it was anything major and he started her on Oxybutynin (Ditropan). He explained that the nerves to some children's bladders take longer to develop and this medication would help with her "overactive bladder." In January 2012 she had a Things got much better but she has still struggled over the last year and was still very dependent on the medication so we made the appointment with the Pediatric Urologist in Omaha.
While Spina Bifida Occulta was not the answer we expected and definitely not the answer we would choose if we had that ability, we are glad to finally have an answer. Hopefully we will soon know where to go from here.
#2~ Camryn has the mildest form of Spina Bifida.
Like I said, I was in complete shock when I got the call from Dr. Donovan's nurse. I did not expect to hear anything she was telling me and it took most of the day before I could tell anyone the news without crying. I have known people with Spina Bifida and I knew the basic facts about it but I didn't know much about the varying degrees of Spina Bifida and I had never even heard of Spina Bifida Occulta which happens to be the mildest form of Spina Bifida.
A little background info about Spina Bifida: (from www.ncbi.nlm.nih.gov)
- Normally, during the first month of a pregnancy, the two sides of the
spine (or backbone) join together to cover the spinal cord, spinal
nerves and meninges (the tissues covering the spinal cord). Spina bifida
refers to any birth defect involving incomplete closure of the spine.
- Myelomeningocele is the most common type of spina bifida. It is a neural
tube defect in which the bones of the spine do not completely form,
resulting in an incomplete spinal canal. This causes the spinal cord and
meninges (the tissues covering the spinal cord) to stick out of the
child's back.
- Spina bifida occulta, a condition in which the bones of the spine do not
close but the spinal cord and meninges remain in place and skin usually
covers the defect
The one thing I did know was that Spina Bifida is a birth defect. This means that there is nothing we did to cause this. I also knew that this is not a degenerative disease, her condition will not worsen and she will not end up in a wheel chair because of this. Camryn was a normal baby that reached every milestone at the appropriate time and is now a normal child that can do anything that any normal child can do.
We are very aware that Camryn could have a much more serious condition, especially after spending a day at the Children's Hospital. She could have a much more serious form of Spina Bifida or one of a number of other serious issues. Instead she has a condition that many people have without even knowing. For that, we are very thankful!
#1 God Gave Us an Amazing, Beautiful Little Girl!
Camryn is 5 1/2, going on 26. She knows EVERYTHING and needs me for almost nothing these days. She knows what she wants and she makes sure we know it. She is smart and independent and strong-willed and I love EVERY bit of her! She has a huge personality and makes sure our lives are never dull! She is also the most loving and caring child who loves her sister more than I ever imagined she would. There is no way I could possibly describe how incredibly special Camryn is. She is so brave, at times incredibly mature, and has the ability to get multiple nurses wrapped tightly around her little fingers!
We went to Omaha planning to have Camryn sedated for the MRI. They let me choose but suggested that she be put under since the MRI takes an hour and she would have to lay perfectly still. After arriving at the hospital the nurses decided that she could maybe do the MRI awake. Of course Camryn wanted to try. They let her pick a movie to watch and since she was awake I got to go with! I sat near her head and she laid on the table as still as she could. Unfortunately it wasn't quite still enough and after about 5 min they decided anesthesia would be the best route. I was so proud of her for trying! She didn't freak out and she actually had stayed still. The problem was if she moved her head at all it moved her upper spine and when the machine got loud she started breathing hard which also caused her to move a little. Unfortunately I couldn't go with her for the second try. She said good-bye to me and climbed on the bed to be wheeled away. No tears! She is SO brave. Almost 2 hours later they returned her to the room. She told me about the mask they used to make her sleepy and only complained a little about the IV that remained in her hand. She came out of the anesthesia like a champ and was able to leave in less than an hour.
So now we wait, again. We wait to hear what they saw on the MRI and we wait to hear what to do next. We have spent a lot of time waiting and I know that I have 2 choices; I can worry about what might be or I can thank God for what is. So for the time being I will thank God that we are finally getting answers. I will thank God that Camryn has a very mild condition that is only causing one minor problem that will hopefully improve in time. And mostly, I will thank God for giving us such an amazing little girl!
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| Camryn's hummingbirds got tagged so they could go with her to get the MRI |
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| Headed off to fall asleep :) |
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| Camryn with her new owl, still a little sleepy. |
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| Showing me the IV |
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| IV is out, and finally getting FOOD! |
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| Camryn wanted to be wheeled out :) |
