Easton's Story

I don't know why I am doing this, but I thought it would be a good idea. I'm not a writer. My family blog is sorely lacking, but for some reason I feel like starting this blog about my E. Some may say it is because he is my favorite child (Halee), but that is not the case. (They are all my favorites in their own special way as any mom would know. :)) I just wanted to get his story out there and give him a voice and maybe be able to help someone that is going through a similar thing and share how my faith is strengthened by having Easton in our family. With that said here is Easton's story:

Easton came into the world quickly (just like the rest of my kids) with no apparent problems. He was wonderful and perfect and I loved him so much. The hospital stay was fairly normal, EXCEPT that Easton did not pass the newborn hearing screen. No big deal, right? That's what the hearing tester and nurses told me and to tell you the truth I had said the same thing to patients myself (having worked Mom/Baby in the past). Just get an appointment with Audiology in the next 10-14 days and get it rechecked. It is probably just fluid build up we were told. Two weeks later we are at the Audiologists and Easton is still not passing. The Audiologist seemed a little worried at this point, but I was still thinking no big deal. The Audiologist had some extra time and decided to run more tests on Easton, which came out okay so we were told to return in four more weeks just to see if we could get him to pass the screening. Fast forward four weeks and Easton still can't pass the screening. Set up an appointment a few days later for even MORE extensive testing and find out Easton has some pretty significant hearing loss and will need hearing aides for his life to have any sort of "normal" hearing. (His hearing was not bad enough to need a cochlear implant. Hearing aides would work fine.) But what was the cause of the loss? We didn't know so that set up an appointment with an ENT so that he would order a CT scan to check the middle ear, bones, nerves, etc.

After pulling some strings we get in to see the ENT two weeks later. During that time I had noticed that Easton's pupils were dilated unequally and it was kind of freaking me out so I asked the ENT about it while we were in. Since we weren't sure on the exact cause of Easton's hearing loss and he had the weird pupil thing going on the ENT decided to order a CT scan of Easton's middle ear and brain. They set up the appointment for a week or so later and that started our first trip (of many) to Primary Children's.

They have the CT scan results almost right away, but won't tell you. You have to call the doctor who ordered them and get them from him. I called the ENT's office when I got home and they said that they had the results, but he was in surgery that day so he wouldn't be able to call me until the next day. Aaaagggggghhhhh! I hate that. I am not a patient person so waiting like that kills me, but whatever, right? I couldn't change it so I decided to be patient. Well, it turns out I didn't have to be because our ENT came in to the office after surgery, saw Easton's results and gave me a call. I should have know since it was way after office hours and he was taking the time to call me that the results wouldn't be good. The ENT said that Easton's inner ear looked good, but that the CT of his brain showed malformations and other irregularities. I felt bad for the doctor because you could tell he didn't want to have to be the one to tell us and he didn't really know what to do with the information anyway. He said that he would let Easton's pediatrician know and also set up an appointment with a Pediatric Neurologist. I don't know how, but letting Easton's pediatrician know kind of fell through the cracks. Although we did get an appointment with the neurologist (who was scheduled out four months!) so we just kind of waited for that.

In the mean time, we got set up with the Early Intervention Team in our area (Kids Who Count) and the Parent Infant Program (School for the Deaf and Blind) people and started seeing an occupational therapist and a hearing therapist a couple times a month. Also our pediatrician finally got the results of the CT scan and set up appointments with and ENT, Geneticist, and Opthamologist (all scheduled two months out) as well as an MRI to check the brain further. This whole time I'm thinking, "There is nothing wrong with him. I don't think that MRI is right." or "It doesn't matter that he can't hold his head up. He is just a little behind." or "He can hear just fine. He doesn't need hearing aides." He did though and he got them when he was 9 weeks old. The first time we put them in and turned them on he started crying and looked at Eric and I like please help me! It was so sad. It took a long time for him to actually like wearing them because of fit and feedback noises and not being able to hold up his head, but he does like wearing them now.

Okay so fast forward another couple months and we are seeing the Opthamologist. Easton's visions is great and the weird pupil thing is a normal abnormality. Nothing to worry about. Yay! The MRI clarifies the abnormalities seen on the CT scan, but until we see the neurologist we won't get a lot of info on that. We see the ENT and Geneticist together and they decided to run some test for congenital CMV as the cause of the hearing loss and brain malformations before doing genetic testing. CMV is a very common virus that if contracted by a pregnant mom could cause problems with the baby. Sure enough, Easton's test came back positive. Unfortunately, unless tested within the first three weeks of life it cannot be officially diagnosed as congenital CMV (which would have been nice to know seeing as how congenital CMV is one of the leading causes of hearing loss at birth), but we went forward with the diagnosis because many of Easton's symptoms aligned with it.

What did this mean? CMV can cause worsening hearing loss in some children so the ENT suggested a six month anti-viral medication therapy with a drug that can be fairly toxic and harmful to the person taking it. Eric and I were a little hesitant to start this with an unofficial diagnosis and only the possibility of further hearing loss, but after lots of prayers, consulting with our pediatrician, which lead to a consult with a pediatric Infectious Disease Specialists and lots of questions for the ENT we decided to go for it. Six months of twice a day medicine that Easton hated the taste of, as well as monthly blood draws was not fun, but I know it was the right decision at the time. During that six months we did get an official congenital CMV diagnosis. The ENT got special permission from the state to test Easton's blood from the PKU test the do in the hospital and again at two weeks. They save a blood spot on each child in the state for several months and we were lucky enough to be able to get his released from the state and sent to a special lab for testing. Truthfully, it didn't really change anything we or his therapists were doing, but it was nice to know. (On a side note, his ENT is trying to get a CMV test added to the PKU and other tests they do at birth. I think it is a great idea given the three week time period of CMV testing.)

We finally saw the neurologist a week or two before Easton turned six months old and let me tell you it was a bust. They really didn't have a whole lot of new information for us and very few answers to our questions. Looking back now, I realize why the wouldn't answer questions like if E would be able to walk, talk, live on his own, etc. They really didn't know, as each kid is so different, but I guess I wish they would have explained that better to us as parents going through this for the first (and hopefully only) time. Instead they told us that Easton would almost certainly have seizures, learning disabilities and gross motor delays. "Call 911 right away if he has a seizure," they said. "Because he will probably stop breathing. Come see us again when he does. Bye." That's not exactly how it went, but that is kind of what I got out of it. Whatever. I still didn't really believe anything that anyone was saying to us cause East was just a perfect, happy little baby. He was always smiling and laughing. He breastfed well and slept pretty good. So what that he still couldn't really hold up his head. And, no, he wasn't rolling over, but so what. It wasn't such a big deal that he couldn't really even open his hands up to grab things, right?

It all really hit me one day at church as I was watching another little boy who was only a week or two older than Easton. There he was sitting, crawling, grabbing toys and putting them to his mouth, babbling and clapping. Easton was not doing ANY of these things. I remember going in to the mother's lounge and crying. My baby was not "normal". What was going to happen? What was his life going to be like? Would he walk? Would he talk? Was he going to have to live with me and Eric forever? The next week or so was probably some of the hardest times of my life. I was so worried about my baby and what his future held. It was also kind of like my "normal" baby died and I had to get used to the idea of a child with disabilities. Although, I know it is not the same as actually having a child die, I still went through some grief and loss and had to come to terms with some things. This is a time when I relied heavily on my Savior and his promise of peace through His Atonement. My testimony was strengthened as I turned to the Lord. I was strengthened. I felt peace.

It was at this time that I had a good chat with Easton's occupational therapist (OT). Easton had always been a really hard worker and really motivated to do the things the therapist was working on so I figured why not give him as much as he could handle? We started seeing his OT once a week, his hearing therapist twice a month, and a physical therapist (PT) twice a month for pool therapy. (We have added more since then too.) We also met another couple of moms and kids with the same diagnosis and they recommended a different neurologist who specializes in kids with congenital CMV. This neurologist was wonderful. He took us step-by-step through Easton's MRI. Showed us what parts of the brain were affected and what that meant in real life, explained that not all kids with cCMV have seizures (Easton still hasn't and his chances of having them go down every day), and was just generally very kind and caring. Easton brain malformations are in the parts of the brain that affect his motor skills and speech, which made sense from what he was doing physically. His cognitive part of the brain was unaffected however and has lead him to have a drive and desire that should take him really far.

Because of the cCMV Easton had been diagnosed with cerebral palsy, hearing loss, and speech delays. Usually I just say cerebral palsy cause it is easier to explain. Here is a good website about CMV and cerebral palsy if you want more information.

So what is Easton doing/not doing right now? He IS holding up his head (most of the time) and his trunk and core are always getting stronger. He IS rolling and scooting and pushing his way all over the place. If he is in the family room and wants to be in his room down the hall, he rolls on his little back and push, push, pushes until he gets to his room. He IS grabbing and holding onto toys, hair, hearing aides, pretty much whatever he can. He IS eating by mouth, although it is soft baby foods and mom or dad has to feed him. He IS making lots of vowel sounds and IS vocalizing more and more all the time. He IS signing and dancing. He isn't sitting, crawling, walking, feeding himself YET, but we have high hopes that he will someday.

My goal is to post fairly often (only time will tell what that means) to let you know what E is up to and all the things I have learned as a mom and we have learned as a family with having this special boy in our family!