Friday, December 16, 2011

Hypoxic Ischemic Encephalopathy/ Cerebral Palsy

On December 14, 2011, Lilly and Logan turned 5 months old!

Lilly had a doctor's appointment today at Physical Medicine and In-patient Rehabilitation today. We went and saw Dr. Oki for the first time. The appointment was at 8:30 am, we left at 7:00 am thinking we would get there on time. But, of course, there was a car accident on I-15, so I sat in traffic, and walked into the clinic at Primary Children's Hospital at 9 am. They said they they only allotted me 60 mins, I could have my 30 minutes still, but they were very busy, and had another appointment at 9:30 am. So I took my 30 minutes. This was the initial appointment, and the whole time, Dr. Oki talked to me about Cerebral Palsy, giving me handouts, etc. I am glad that I already taught myself and researched things, and learned because of my Facebook HIE groups. I knew what she was talking about. She talked fast to get everything in, and gave me a lot of information. I learned some stuff, instead of it ALL going over my head!

Dr. Oki wants Lilly to start Physical Therapy for her neck. I told her that we have Early Intervention, but she wants her to have Physical Therapy outside of Early Intervention and keep with Early Intervention too. We are going to try that, and see if it will help Lilly's neck before they think about putting Botox into her neck to try to bring her neck to the left too.

Dr. Oki also talked about hip dysplagia and scoliosis, because Lilly has a very high chance of developing later. So we need to keep an eye out for it. Also, we talked about our miracle drug, Baclofen. Lilly has been doing so much better since she was put on Baclofen. She had neurological irritability and cried and cried and cried, and NEVER slept before it. But it has helped a lot. It helps because of Lilly's Spasticity (muscles contracted, causing her muscles to be stiff, or Lilly making awkward movements, etc).

I told Dr. Oki that Dr. Knochel told me that he thinks Lilly has Mild Cerebral Palsy. She said "Well, I would say Mild to Moderate." I asked her the kind she thinks she has, she told me "Mild to Moderate Global Spastic Cerebral Palsy." She said Global because it is effecting her whole body, not just in one area. So I am wondering if that is the same as Spastic Quadriplegia Cerebral Palsy. Cause on Google I keep trying to find it under Global, and can not find anything. But a lot of information under Spastic Quadriplegia CP. Quadriplegia meaning it effects all 4 limbs. But I think she said Global cause her core/ trunk is weak.

I really hate this waiting game, trying to figure out what she will be able to do and will not be able to do! This sucks! I HATE the waiting game!!!! I know that Spastic Quadriplegia CP is the hardest kind of CP to learn how to walk, but it CAN be done. Just depends, and we will not know until later.

I also have done some research on Hypoxic Ischemic Encephalopathy (HIE), which means going without oxygen before, during or after birth. I looked up having a knot in her cord. Did you know that there is a 1% chance of having a baby having true knot in their cord. My doctors kept talking about it, like they could not believe it was there. Learning there is a 1% chance, I realize why! The weird thing is, both Lilly and Logan had a true knot in there cords. The difference in Lilly's cord, was that hers got tight and cut off blood and oxygen. Logan's cord never got tight. So he is fine. Which is interesting cause with my back, there is a 1 in a million chance of me getting a hematoma on my spine without a prior surgery. Well, I was that 1! And Lilly and Logan are in that 1%. I guess we just like to bet the chances. So I am thinking that I should get lottery tickets, and try to win with my chances! We do need a lot better house for Lilly, one that she can get around in a wheelchair, etc. Basement apartment just is not going to do it for her later, and can't afford a great place for her. So I might just play my chances for Home Makeover. LOL. I am a disabled veteran, I have adopted kids, and I have a disabled child. People get it for only one of those things, I have ALL 3! Not to mention, my husband has a Traumatic Brain Injury (TBI) and was in a coma due to a car accident when he was 15.

I LOVE the facebook pages that I am apart of for support for HIE. But I would LOVE to meet people face to face that are going through the same thing. I am trying to start something up for people in Utah. So we can get together, have mom's night out, play groups, couple dates, just hang out, etc. for people going through the same thing. That is my goal at least. It might take a while to start up. First thing I need to do is find enough people in Utah that has HIE kiddo's.

I was talking to a friend that is a NICU nurse at Utah Valley Hospital about it, and she said 2 months ago, they got a cooling machine. HIE babies get cooled right after birth to try to prevent the amount of brain damage. Lilly was cooled at Primary Children's Hospital. It would have been nice to only go to Utah Valley Hospital in Orem, instead of SLC! But regardless, they got it 2 months ago. Anyways, a lady that works there is going to help me, by sending families my way in the future, so we can help these families, after they find out that they have an HIE baby. I hope we can help some of these families. Cause having an HIE baby is not a temporary thing, that in a few years they can overcome. This is something that will effect our babies for the rest of their lives! For example, a premature baby might be behind for awhile, but unless there is other things, in a few years, they can catch up. Lilly will struggle with her brain damage (HIE) and CP for the rest of her life! Mary, my OT also said she would let other parents know too. I hope we can start this up!

Anyways, enjoy some pictures!
Logan is a chill baby!

My cute twins!

Lilly's G tube

No, the G tube does not hurt her

I finally caught this on tape! It is so cute!

1 comment:

  1. Just found your blog from Facebook, clicked on your name form the MOM page. I also have twins, one girl that's special needs, one boy who's typical. They just turned four in October. You will love love love (LOVE) how much your boys take care of Lilly! It's the most fun and amazing thing I have ever seen.

    I don't envy this stage you are in, where every appointment you learn a new diagnosis, a new term that you find yourself running off to google. It seems like it's never ending at this point, but it will slow... I promise!

    Keep celebrating your beautiful miracle! I am sure she has already changed your life in ways you never imagined!