Wednesday, March 25, 2009

We got some good news the other day....Emerson's final genetic test came back to reveal that her Hypertrophic Cardiomyopathy is not a primary heart condition and is more than likely caused by her Williams Syndrome. This is good news because most of the WS children tend to outgrow their heart problems. YAY!!! So excited about that.

She is getting back into her old routine of only sleeping 3-4 hours at nights, so that's been fun. She wakes up several times coughing and gagging, most likely from her reflux. Her Occupational Therapist, Holly, is going with us to our next appointment with Dr. Escobar, her geneticist, to suggest some tests that she feel could help eliminate some ideas about what is keeping Emerson up at night. We will hopefully get a sleep study to make sure that she isn't having any apnea, or worse, any seizures. We are also going to talk to her doctor about putting Emmy on melatonin, so she can sleep at night...mommy is a bit worn out! Also, I can see such a big improvement in her when she sleeps!

Nothing else really going on...Emerson is continuing with her First Steps. She absolutely hates it, but we are seeing strides!

Thursday, March 19, 2009

Another Day In The Life....

So Emerson is on week 2 of her First Steps therapy and doing pretty well I think. We have been working a lot on trying to get her neck strong so she can hold her own head...soon we hope. We've also been working on some exercises with her mouth to strengthen her muscles so she can eat better. She is trying to roll on her side now, so hopefully in the next couple of months she will be able to roll over all the way...(fingers crossed)!

We also followed up with Emerson's surgeon..he placed her g-tube. He said that she healed very well and has gained weight nicely, which is the goal. He also cleared her for tummy time, yay, so I think that will help with her development as well.

Nothing else too exciting with her right now....although, we believe she might have started teething...yikes! She has been much crankier than usual and has the beginnings of two little teeth on her bottom gums! So big!

We also close on our new house tomorrow...exciting! Can't wait to make some memories with the girls there!

Tuesday, March 10, 2009

First Steps

My husband and I went to see my brother-in-law in his high school musical last week. He was the main character and was absolutely amazing. To stay on topic, my husband's cousin was there with her 5 month old son, who was born 2 weeks before Emerson. It literally brought tears to my eyes to see how much more advanced he was developmentally than Emmy. He was sitting up, holding his own head up, reaching for things, and laughing. Emerson does not do any of that. I could not help but be sad for Emerson, and us as parents.

This all being said, Emerson starts first steps tomorrow. She meets with an occupational therapist and will meet with a developmental therapist next week. I am very excited for her. I think it will be very good for her, and for me to learn how to work with her and help her grow and become stronger. I know changes won't happen overnight, but I believe with a lot of hard work and a positive attitude, she will succeed. I will post later and let everyone know how she does.

We are also following up with the surgeon who did Emerson's G-tube and nissen on Thursday. He will show me how to change her feeding tube (terrifying) and what to do if it gets pulled out. I am also excited because for the past 6 weeks (her healing period) she hasn't been able to have tummy time. I hope that the re-introduction of this into her routine will help her neck become stronger and hopefully be able to hold her head up on her own in a few months. Wish us luck!

Wednesday, March 4, 2009

I've decided to start this blog in an effort to keep people updated on our angel Emerson, and also as my own personal outlet. Emerson was admitted to Peyton Manning's Childrens Hospital on January 21, 2009, which happened to be my step-daughter's 6th birthday, via the emergency room, after an echocardiogram revealed an abnormality with her heart. When we got there we learned that Emerson was suffering from a heart problem called Hypertrophic Cardiomyopathy, which basically means that her heart muscles are very thick. At the time of her admittance, Emerson was 3 months old. At birth, she had an echo because of a heart murmur. We were told that it should go away within 6 months. At that time she had no signs of HCM. In 3 months it had advanced from non-existent to very severe. My husband and I were in shock. We absolutely did not expect to hear that. We knew that there was something wrong with her. She had had terrible feeding and sleep issues since birth.

After what felt like a marathon pumbling, and more bad news than we could have ever imagined, we finally met with a geneticist who explained to us that her heart problems, which also consisted of pulmonary and aortic stenosis, were characteristic if certain genetic conditions that they wanted to test for....amoung them, Williams Syndrome.

At first, I didn't really believe that her problem could be a result of a genetic syndrome. After my husband and I did some research on WS, we both agreed that Emerson really fit the profile, especially with her colic, feeding and sleeping issues, and heart problems. After almost 2 weeks in the hospital, so many tests, and surgery to have a gastric feeding tube and nissen (to prevent acid reflux), we finally got to go home. A few weeks later, we got the call telling us that Emerson tested positive for Williams Syndrome. By this point, my husband and I had plenty of time to get used to the idea so we weren't really shocked by the news, more glad that she had a diagnosis.

This has been a few weeks ago and we are all still trying to adjust to everything. It is much more difficult than I imagined, but I know that our daughter is strong and can overcome anything. Her heart condition is extremely rare in infants and is in a very severe stage. It is all up to her body to heal itself now, so we are keeping our fingers crossed and hoping our angel will pull through so we get to meet the wonderful person that she is destined to become.

In the past weeks and the weeks to come, we have had many appointments with many different doctors. We followed up with our cardiologist, who said that Emerson's heart hadn't gotten any worse since she left the hospital, which was very good news. He also said that if her heart condition is a direct result from WS, then she had a better shot at recovering from it. We are still waiting on the test to determine if it is from the WS or not. We've seen her primary pediatrician several times, a gastroenterologist, genetecist, and are getting ready to follow up with her surgeon and endocrinologist. Wish us luck, and I will continue to keep everyone updated on how Emmy is doing!!

Who knew they made hospital gowns for babies?!?