Quick post because I love you guys and want to keep you informed..and I have dishes waiting for me in the kitchen! We went to the Cleveland Clinic Main Campus today (1.5 hour drive) for Riley's appointment with her Opthamologist (eye dr), Dr. Paul Rychwalski. We were instructed to have this follow up vision check up since Riley no longer takes Sabril (Vigabatrin) to see if her eye sight was affected. We were very happy to hear that her vision is perfect, like her first check up before starting the drug. Which ofcourse was a relief and what we had hoped especially because of her short time on it (less than 3 months.) So glad that's behind us and not something else we have to worry about at this time.
Also, wanted to share with you the results of my genetic testing. I called today since it had been a couple weeks past their expected deadline to have the results and be able to tell me. I was so glad to hear that I am NOT a carrier of TSC! My blood work showed I was in "the normal range" whatever that means!. We're leaning to not getting Galen tested because of the rarity it would be for him and his sister to not show any signs of the disease. 33% of TSC patients get it from a parent while 66% is new genetic mutation. So it would appear that somehow while her genetic makeup was forming, the TSC 2 gene was mutated. After considering this, we've decided to have more children in the future and make more cute babies like Riley! Adoption is always an option though! Alright, well we'll see how her weight check goes tomorrow. Not too excited about it. I started her on fresh goats milk today. I want us to exhaust our options before feeding tubes! You'll here from me soon! Again, prayer's appreciated!
Monday, May 16, 2011
Wednesday, May 11, 2011
Discouraged, but not Defeated.
I hate this disease. I HATE Tuberous Sclerosis Complex. I want to sit here and write a string of curse words to describe my frustrated feelings about this awful, merciless disease. But I won't. It will do no good. So I'll share with you; my amazing, always loving and encouraging friends, the latest on my sweet, little trooper of a daughter, Riley.
Yesterday (Tues. May 10th) was Riley's weight check-up at her pediatrician's office. First, I need to tell you that Riley has been eating sooo well these last two weeks! Three jars of stage 2 baby food, plus three 4 oz bottles of the richer formula a day. I thought this was good. Galen and I both thought we saw a weight gain in her face. So imagine my SHOCK when I lay her butt-naked on the scale in that small dr's office room, watching the number's fluctuate for a few seconds, only to land on 14 lbs exactly!!! (She lost 1.5 oz's) "What?!"..I'm thinking. I was so tempted to ask the nurse if she was sure the scale wasn't broken or off. But instead I picked Riley up, put back on her pamper and took a seat in disbelief...and fear. The nurse cataloged the pathetic number in their computer and left me in a quandary. What was I doing wrong?! This was the most I had seen her ever eat. I was sure the baby food had more calories than the milk and she really was enjoying it. Hmm. Well, our very attentive pediatrician, finally made an appearance 20 minutes later. As he took a seat, he informed me that he had taken the time to talk to the visiting pediatric neurologist that visited the office that day. Asking him if there was anything related to TSC that could affect Riley's weight gain. He did say that if one of her tumors was close to her hypothalamus (the part of the brain that controls growth and development) it may be a cause for her lack of real growth. So after viewing her number's and seeing that not only had she not gained, or even stayed the same but LOST weight, he proceeded to tell me my limited options. She can come in at night and get a feeding tube put down her nose and into her stomach and get those extra calories throughout the night. Or she can have a surgery where they insert a feeding tube into her stomach. Um, NO WAY JOSE! Not a freakin' chance!!! So yes, I have one week to get her to gain something; anything! Even an ounce would be promising! Or else we will need to try one of these more drastic options.
So yup, that's about it. Oh, and Dr. Strong (pediatrician) did some research and amazing, crazy math skills and configured that Riley's calorie intake in a day is only coming out at 400 something calories when ideally she needs to be consuming 900 something. So baby food is out of the picture until we get her to the weight needed for surgery. The way he has me prepare her formula is almost double the regular dosing, so it makes it so much more nutritious and fattening. I need to go from 12 oz's a day to 28! Big jump. It doesn't help that she won't take more than 4 oz's at a sitting, and boy have I tried! So we are aiming for six 5oz bottles in a 24 hour period. It is almost 8pm and she has had 13 today. So if she doesn't consume our goal 28oz during the day this mama is setting an alarm for night time feedings. I'm going to do everything I can. Then if it comes down to those nightmare options, I'll know I did all I could do.
Next Tuesday (May 17th) is our deadline. It's not long at all, so please join me in praying for our peanut! That brain surgery HAS to happen, and July is right around the corner. FYI, Riley weighed more at the end of January when she was first diagnosed with TSC at the Cleveland Clinic. At 14.8 lbs. I won't lie to you, this is getting harder. On both Galen and I. Last night we confessed our arising fear. Losing her. We never would have imagined we'd be facing this issue with her health, and that's what I hate about TSC. You just never know. I'm trying to have faith and trust God. I know He would never allow us to bear too much. But I fear He's going to push me to my limits. But alas, He is a loving God, and that is one thing that I've never taken into question through all this. I love Him. How could I not when He's given me this darling little miracle who gives me so much joy and astounds all of us with her fast learning capabilities. (Totally impressing her physical therapist, Audra, these last couple weeks!) Again, loved ones, we CAN NOT thank you enough for all the prayers you send up and love you give us. We love you! I'll keep you updated.
Yesterday (Tues. May 10th) was Riley's weight check-up at her pediatrician's office. First, I need to tell you that Riley has been eating sooo well these last two weeks! Three jars of stage 2 baby food, plus three 4 oz bottles of the richer formula a day. I thought this was good. Galen and I both thought we saw a weight gain in her face. So imagine my SHOCK when I lay her butt-naked on the scale in that small dr's office room, watching the number's fluctuate for a few seconds, only to land on 14 lbs exactly!!! (She lost 1.5 oz's) "What?!"..I'm thinking. I was so tempted to ask the nurse if she was sure the scale wasn't broken or off. But instead I picked Riley up, put back on her pamper and took a seat in disbelief...and fear. The nurse cataloged the pathetic number in their computer and left me in a quandary. What was I doing wrong?! This was the most I had seen her ever eat. I was sure the baby food had more calories than the milk and she really was enjoying it. Hmm. Well, our very attentive pediatrician, finally made an appearance 20 minutes later. As he took a seat, he informed me that he had taken the time to talk to the visiting pediatric neurologist that visited the office that day. Asking him if there was anything related to TSC that could affect Riley's weight gain. He did say that if one of her tumors was close to her hypothalamus (the part of the brain that controls growth and development) it may be a cause for her lack of real growth. So after viewing her number's and seeing that not only had she not gained, or even stayed the same but LOST weight, he proceeded to tell me my limited options. She can come in at night and get a feeding tube put down her nose and into her stomach and get those extra calories throughout the night. Or she can have a surgery where they insert a feeding tube into her stomach. Um, NO WAY JOSE! Not a freakin' chance!!! So yes, I have one week to get her to gain something; anything! Even an ounce would be promising! Or else we will need to try one of these more drastic options.
So yup, that's about it. Oh, and Dr. Strong (pediatrician) did some research and amazing, crazy math skills and configured that Riley's calorie intake in a day is only coming out at 400 something calories when ideally she needs to be consuming 900 something. So baby food is out of the picture until we get her to the weight needed for surgery. The way he has me prepare her formula is almost double the regular dosing, so it makes it so much more nutritious and fattening. I need to go from 12 oz's a day to 28! Big jump. It doesn't help that she won't take more than 4 oz's at a sitting, and boy have I tried! So we are aiming for six 5oz bottles in a 24 hour period. It is almost 8pm and she has had 13 today. So if she doesn't consume our goal 28oz during the day this mama is setting an alarm for night time feedings. I'm going to do everything I can. Then if it comes down to those nightmare options, I'll know I did all I could do.
Next Tuesday (May 17th) is our deadline. It's not long at all, so please join me in praying for our peanut! That brain surgery HAS to happen, and July is right around the corner. FYI, Riley weighed more at the end of January when she was first diagnosed with TSC at the Cleveland Clinic. At 14.8 lbs. I won't lie to you, this is getting harder. On both Galen and I. Last night we confessed our arising fear. Losing her. We never would have imagined we'd be facing this issue with her health, and that's what I hate about TSC. You just never know. I'm trying to have faith and trust God. I know He would never allow us to bear too much. But I fear He's going to push me to my limits. But alas, He is a loving God, and that is one thing that I've never taken into question through all this. I love Him. How could I not when He's given me this darling little miracle who gives me so much joy and astounds all of us with her fast learning capabilities. (Totally impressing her physical therapist, Audra, these last couple weeks!) Again, loved ones, we CAN NOT thank you enough for all the prayers you send up and love you give us. We love you! I'll keep you updated.
Subscribe to:
Posts (Atom)