Going Home Soon....

So we found out that we are probably going home either tomorrow or on Friday. Although the doctors still don't know why Emerson is vomiting, they have been able to greatly reduce her symptoms by putting her on a continuous feed, 24 ounces in 24 hours. This isn't ideal, and although we don't want to take Emerson home this way, it is our only option for now. Emerson's test couldn't be coordinated until next Wednesday. We will be coming back to Cincinnati then for Emmy's cardiac cath and endoscopy. Hopefully they find some valuable information that will lead them to a diagnosis!

If the doctors are unable to find anything with these tests, then unfortunately our only option will be to give Emerson a G-J tube, which is basically a feeding tube directly into her intestines so she won't be able to vomit. The only downside is that she would have to be on a continuous feed indefinitely.

I have a lot of faith in our cardiologist and am hoping that he will do everything in his power to figure out what is wrong with my little angle!1

It has been quite some time since I have been on here. Emerson is currently in the hospital and I have nothing but time so I figured I would update everyone. Emerson was admitted to Cincinnati Children's Hospital last Tuesday for severe vomiting. Her cardiologist, Dr. Towbin, wanted her admitted right away to prevent dehydration, because Emerson has been vomiting for months now. Last January she had her g-tube and a nissan placed. The nissan was supposed to prevent vomiting, however, in June, Emmy finally vomited past her nissan. It has been all downhill from there. She is to the point where she is vomiting several times a day after each feeding.

We have been in the hospital for almost a week now and her doctors still don't know why she is having this problem. So far, she has had a repeat Upper GI, a chest x-ray, CT scan, an echocardiogram (luckily her heart isn't getting any worse), and numerous labs. Everything has come back normal. We've met with the GI team here, which are ranked in the top 3 in the country, and they are stumped. They have tried numerous formulas and volumes and haven't found a solution. Currently, Emerson is on a continuous feed. She seems to have the best luck with that, though she still vomits.

Tomorrow, Emerson is undergoing a 2nd Endoscopy with a 24 hour probe, an MRI, and a cardiac cath. Hopefully her doctors will be able to gather some valuable information that will lead them to the answer. I cannot watch my baby suffer any longer!!

Since I've been here, I heard about another Williams family suffering a horrific tragedy. My heart and thoughts go out to little Sophie and her family. Rest in peace, Little Angel!

Making Strides

Emerson has made accomplished some great things lately. She is starting to sit up more and more on her own, and is also starting to stand! She is so big!!

We scheduled our appointment with Dr. Towbin at Cincinnati Children's Hospital for August 20th. I am very excited and anxious. I know that if anyone can help our family, it's going to be him. I also want to say a special thank you to our OT, Holly. I love her so much for what she is doing for my family. And as much as Emerson hates her right now, lol, she will grow to love her too!

I will update and let everyone know what we find out with her appointment!

It's Been Awhile!!

I finally have a new computer, well, a donated computer, but it works so who cares. Since I've last been on here, we have had a lot going on. I just quit my job last Friday so I am able to stay home with Emerson all the time now, YAY!!!!!!! It is wonderful, I missed her so much being away at work. We have followed up wither Emerson's cardiologist and geneticist in the past couple weeks. Her genetics appointment went very well; Dr. Escobar tweaked Emerson's feeding schedule so she is not on an overnight feed anymore, yay! That is wonderful. She is up to 17 pounds 9 ounces now and is 27 inches long, so as you can see, her g-tube has been a blessing! Her cardiologist said that Emerson is not better, no worse. So we will take that as good news. We see him again in 4 months and then we will schedule to have a heart cath done! In the meantime, my husband and I are planning to take Emerson to The Cincinnati Children's Hospital to get a second opinion on her heart condition. We are going to see Dr. Towbin, who is one of the leading doctors in cardiomyopathies. Hopefully he can help us! I'll let everyone know how that turns out!

Emerson is still doing first steps and seems to be doing better all the time. She is sitting up for short periods of time on her own, and is becoming far more intersted in her toys. Today she stood up for the first time, with the help of the couch! It was amazing!

All for now, I will be on again soon! Hope everyone is well!

Big Changes

It has been so long since I have been on here, and there have been some big changes with our family. We bought a new house and moved in a few months ago, finally settled in for the most part! I started a full-time job, which is much harder than I anticipated. I miss being home with my baby girl so much, but Brandon and I are working on a better solution.

Medically, Emerson seems to be doing alright. We went back to her cardiologist in April and her Hypertrophic Cardiomyopathy is actually worse, which was devastating to hear. But her cardiologist said that it is promising that she looks and acts so great. Her hypothyroidism is completely cleared up so that is one less thing that we have to worry about. She is still in first steps, OT once a week and getting ready to be two times a week, developmental therapy once a week, and we are getting ready to start seeing a Speech Therapist and a Dietician. She is doing really well with it all. She is holding her head up completely on her own and we are working on sitting up now. She is still having some feeding issues but is working on eating actual baby food and is doing quite well. She is sleeping much better now, 8-9 hours a night and only waking up, on average, 3-4 times a night for a few minutes at a time, which is a huge improvement from where she was!

I am hoping to update more often, but am very busy these days! Hope to get on here soon!

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!

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!