One of my smiling moments...
Lucy's exhausted...Hope everyone had a wonderful Christmas and a happy and safe New Year!
We have been on the Clinic tour since the last post. We are calling it the referral merry-go-round to figure out why Jenna continues to spit up so much after each feeding. Unfortunately, we are no closer to an answer than we were with our first appointment.
We have had an Upper GI, which was normal, seen the ENT specialists, normal except for swollen adenoids, the Gastroenterologist- twice, a neurologist and a nutritionist. She has a hearing test scheduled and they ordered the big chromosome test which will take 6-8 weeks for the results.
The chromosome test we had done to show that she has Turners was the simple test. As it was told to us, they line up the chromosomes like books and there should be 46 "books" on the shelf. This test now looks at the paragraphs of each book to see if there is anything else missing.
We have now added "failure to thrive" to her chart. She lost an ounce in weight over a month's period, which gives her the designation. What's amazing was at her last appointment in Cleveland with the neurologist, I finally had enough and said we know she is not gaining weight because she is spitting up, and asked what in the battery of tests they ordered will tell us why she is doing this. The answer-nothing! They just want to rule out everything else before they tell us it could be she just spits up more than other babies, but nothing physical or metabolic is wrong. The research we have done suggests that most Turners babies spit up and other families have had little success with doctors on the subject. We'll give it a little bit longer...but patience is wearing thin.
Jenna is now on Prevacid and a formula that we have to order. We're going to try this for a month and see if her gut will relax. The formula is very broken down and easily digested. We are hoping this is going to help and she can go back on another formula once this calms down.
Below are some pictures from our Christmas. Jimmy had a blast although he is afraid of Santa in a big way! We are still cleaing up from Christmas aftermath! Enjoy!!!
We have been on the Clinic tour since the last post. We are calling it the referral merry-go-round to figure out why Jenna continues to spit up so much after each feeding. Unfortunately, we are no closer to an answer than we were with our first appointment.
We have had an Upper GI, which was normal, seen the ENT specialists, normal except for swollen adenoids, the Gastroenterologist- twice, a neurologist and a nutritionist. She has a hearing test scheduled and they ordered the big chromosome test which will take 6-8 weeks for the results.
The chromosome test we had done to show that she has Turners was the simple test. As it was told to us, they line up the chromosomes like books and there should be 46 "books" on the shelf. This test now looks at the paragraphs of each book to see if there is anything else missing.
We have now added "failure to thrive" to her chart. She lost an ounce in weight over a month's period, which gives her the designation. What's amazing was at her last appointment in Cleveland with the neurologist, I finally had enough and said we know she is not gaining weight because she is spitting up, and asked what in the battery of tests they ordered will tell us why she is doing this. The answer-nothing! They just want to rule out everything else before they tell us it could be she just spits up more than other babies, but nothing physical or metabolic is wrong. The research we have done suggests that most Turners babies spit up and other families have had little success with doctors on the subject. We'll give it a little bit longer...but patience is wearing thin.
Jenna is now on Prevacid and a formula that we have to order. We're going to try this for a month and see if her gut will relax. The formula is very broken down and easily digested. We are hoping this is going to help and she can go back on another formula once this calms down.
Below are some pictures from our Christmas. Jimmy had a blast although he is afraid of Santa in a big way! We are still cleaing up from Christmas aftermath! Enjoy!!!
2 comments:
We have a spitter as well :)
Timmy has Pregestimil as a formula, as well as Prevacid. Is she on anything like Albuterol? Anything that is a "relaxer" will cause the sphinter valve to relax, allowing food to come back up.
We enjoy reading your updates !!!
Hello Jim and Janice. I am not sure how to post here but I will give it a shot. I am a former St. John HS grad (1984-a bit older than you guys!!) and also have a daugther with TS. We found out in May of last year when she was just over 2 years old. She was also diagnosed with Autism (which we now believe is really only behaviors caused by the Turner Syndrome) You two seem extremely knowledgable and well read on TS, however, I would like to offer you my ear and knowledge. I know what it is like to try to find out information about this syndrome that nobody seems to know much about. We actually have had some of Madison's other doctors ask us what TS is!!!! Can you imagine! I have a lot to share with you, but I will just give you my email address so we can exchange phone numbers sometime and connect. Also, there is a conference in Akron next weekend that we will be attending and I was wondering if you guys will be as well. If you need info regarding the conference just let me know. It is free and girls with TS can attend, however, it is really for older girls who can attend a class. It will be interesting to us to see girls with TS as we only know one other little girl here in Columbus.
I will stop filling your blog here and leave you with my best wishes and of course my email address:
juliamott@wowway.com.
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