But it has gone long enough without an update, so here I am! Galen is hard at work..at work! and Riley is taking a much needed nap snuggled under her baby quilt her Auntie Rachel made her (her eyes close so fast when the silky side touches her chubby cheeks!) So yes, MOMMY TIME!!!
After our visit with Riley's Cleveland Clinic surgeon, Dr. Bingamen, on April 5th, at which time her brain surgery was post-poned, we have enjoyed the somewhat laid back, normal lives we lead. That weekend Riley and I came down with a nasty head cold. Mine lasted a week but hers held on longer and a small raspiness is still lodged in her throat. We did end up taking her to a pediatrician just because we weren't sure if it could be something more and she was having trouble eating.
Continued Friday, April 29, 2011
Sorry about that interruption! Galen came home and whisked baby and I away for a little bit! I'm going to try my best to get a post up tonight (as long as hubby helps like he said! :) Ok, so where was I? Her pediatrician appointment when she was sick. So we left the dr's office relieved to hear that Riley's lungs were completely clear and it was just a typical, pesky cold she would have to naturally get over. Which she did sometime last weekend! It's nice to have her "healthy" again! One less thing we have to worry about!
While there, Dr. Strong checked Riley's growth chart. He was quite upset to see that Riley hadn't gained weight in almost 3 months. He instructed us on how to make her feedings more fattening. We add an extra half a scoop per scoop of formula. So for a 2 oz bottle where you would add 1 scoop of formula, we now add 1.5; for a 4oz bottle, 3 scoops and so on! Then we were instructed to return in two weeks for a weight check. That appointment was this past Tuesday. Not a good day, I can tell you! Galen asked if I could handle it alone. I assured him it wouldn't be a problem since it was just a little pediatrician appt. Ugh, I don't like the unexpected! Especially when I'm alone! ( I'll post what I shared on my Facebook that day..I'm sorry if this is "cheating" as a blogger but I really don't have a lot of extra time!)
....
And we go from bad to worse!
by Kamzin Faith Hostetler on Tuesday, April 26, 2011 at 2:13pm
Riley's follow-up pediatrician appointment, this afternoon, did not go well. Her dr is monitoring her weight and wanted to see her today after changing Riley's diet around a little, two weeks ago. We were both very disappointed when the scale weighed her in at 14lbs 1oz. She lost 8oz since our last visit. Granted she's been sick but he said he at least wanted her to remain the same weight even if she didn't gain any. It doesn't sound like that big of a deal, right? WRONG! She is going on her fourth month of not gaining. She has been in the 14 pounds for three months. Now her pediatrician is very concerned. There could be a few problems he's checking into, none of which I remember their fancy medical term. One has to do with her kidneys not functioning properly. They could be washing everything out including proteins to help her gain fat. There is a medication for that. Her thyroid might not be working well either. So poor, lil Riley had to have a catheter put in so they could draw some urine and then she had blood work drawn at the lab. We will know the results of those today. Ok here's the term (I looked it up)- Renal Tubular Acidosis. So by the end of today we will know if she has this condition and she'll get prescribed a medication for it. If the tests do not come back pointing towards this, we'll have to check her thyroid. Then towards the end he said two words I never thought I'd here- "feeding tube". I just cried. How much worse can this get?! I can't even honestly answer that, because I know this is just the beginning and it scares me to death. I feel like with each dr's appointment filled with negatives prognosises my worst fear is coming too close for comfort....losing her for good! Please pray for us, especially that Riley will EAT and gain lots of weight. You see, we're coming to a standstill. She NEEDS the brain surgery but they can't operate on her till she gains weight so something needs to change and we don't have a lot of time to stand around hoping they will on their own. My mama's heart is overwhelmed. It is soooo painful to watch your baby who you love more than anything, go through this.
That was my morning. Early that evening I did receive the call from her pediatrician's office with good news that Riley does NOT have RTA! YAY! We have another weight check in two weeks; May 10th. Come on fat rolls!!! Riley and I have the opposite problem with weight. I would gladly help her out by giving her some of mine, but, well, that's just not possible! So we'll work hard on helping her to gain while I do my best to shed my winter (just go with me here!) flubber! I am happy to report that her appetite has increased the last couple days. Our goal is to see at least 15 lbs on the scale at our next appointment! Please pray with us!
I would like to thank you all for your faithful prayers and support for Riley and our family. I'm telling you, they are felt and seen in our everyday lives! I stop sometimes when I feel we have a victory with Riley or I have that extra patience and endurance in that trying moment, and just KNOW God is answering your prayers. I love not feeling alone. But I have this huge amount of gratefulness to this one particular friend, her family and her church! Every time I talk to my dearest friend Rachel, she asks about our Riley, shares how they're praying and also tells me about her amazing church who continually ask for updates and who really, really cares for our Sweetie! I cannot tell you how this blesses me. Sometimes, it's hard for me to understand how folks who don't even know us could care so much about our trials. But I am overwhelmed with your love and thank God for you! So thank you so very much Rachel's pastor and church!!!!!
Riley ended Sabril (Vigabatrin) on Monday (April 25th) after 3 months of taking it. We are glad to see this seizure medication in particular go because of the dangers of sight impairment. It has only been FDA approved for one or two years, I believe, because of these dangers. There are also only a select few special pharmacies in the US that carry it, so it had to be mailed to our house each month. The cost was over a whopping two grand for one month's supply! Anyways, one's gone but another has taken it's place. Riley is now on the very strong seizure med, Topamax. (So Riley is taking three seizure meds at the time.) Thankfully we haven't seen any crazy side effects with this new one. But we are still increasing it, and will continue until the full dosing in a couple weeks. Ugh! I guess this is our life..in this life anyway. I must be honest. Having a child with an incurable disease makes sin and the consequences very real. I've thought back to Adam and Eve a lot lately. That's when sin was introduced and all the ugly and evil of life with it. It's not just snakes and lamb-eating lions, but sickness and disease and thus suffering. I have a much more heavenly focused mindset now. This life stinks. I'm glad to be alive, yes, but it's like a pot-hole full of stagnant water. (That's the analogy that came to mind...and yes, our post winter roads need help bad!) So, bottom line, having a sick child with a future unknown makes me look heavenward and focus on His promises.
I'm going to skiddadle, head to the kitchen, snap my fingers and try to make the dirty supper dishes disappear! Hostetler love to you all! ~ Kam
That was my morning. Early that evening I did receive the call from her pediatrician's office with good news that Riley does NOT have RTA! YAY! We have another weight check in two weeks; May 10th. Come on fat rolls!!! Riley and I have the opposite problem with weight. I would gladly help her out by giving her some of mine, but, well, that's just not possible! So we'll work hard on helping her to gain while I do my best to shed my winter (just go with me here!) flubber! I am happy to report that her appetite has increased the last couple days. Our goal is to see at least 15 lbs on the scale at our next appointment! Please pray with us!
I would like to thank you all for your faithful prayers and support for Riley and our family. I'm telling you, they are felt and seen in our everyday lives! I stop sometimes when I feel we have a victory with Riley or I have that extra patience and endurance in that trying moment, and just KNOW God is answering your prayers. I love not feeling alone. But I have this huge amount of gratefulness to this one particular friend, her family and her church! Every time I talk to my dearest friend Rachel, she asks about our Riley, shares how they're praying and also tells me about her amazing church who continually ask for updates and who really, really cares for our Sweetie! I cannot tell you how this blesses me. Sometimes, it's hard for me to understand how folks who don't even know us could care so much about our trials. But I am overwhelmed with your love and thank God for you! So thank you so very much Rachel's pastor and church!!!!!
Riley ended Sabril (Vigabatrin) on Monday (April 25th) after 3 months of taking it. We are glad to see this seizure medication in particular go because of the dangers of sight impairment. It has only been FDA approved for one or two years, I believe, because of these dangers. There are also only a select few special pharmacies in the US that carry it, so it had to be mailed to our house each month. The cost was over a whopping two grand for one month's supply! Anyways, one's gone but another has taken it's place. Riley is now on the very strong seizure med, Topamax. (So Riley is taking three seizure meds at the time.) Thankfully we haven't seen any crazy side effects with this new one. But we are still increasing it, and will continue until the full dosing in a couple weeks. Ugh! I guess this is our life..in this life anyway. I must be honest. Having a child with an incurable disease makes sin and the consequences very real. I've thought back to Adam and Eve a lot lately. That's when sin was introduced and all the ugly and evil of life with it. It's not just snakes and lamb-eating lions, but sickness and disease and thus suffering. I have a much more heavenly focused mindset now. This life stinks. I'm glad to be alive, yes, but it's like a pot-hole full of stagnant water. (That's the analogy that came to mind...and yes, our post winter roads need help bad!) So, bottom line, having a sick child with a future unknown makes me look heavenward and focus on His promises.
I'm going to skiddadle, head to the kitchen, snap my fingers and try to make the dirty supper dishes disappear! Hostetler love to you all! ~ Kam
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| Our Pretty Spring Flower! |
For not gaining any weight she looks healthy.. and so cute!! Will be praying for those fat rolls as well =)
ReplyDeleteHey Kam!!!
ReplyDeleteLove you, Dahling! Thank you so much for the update so we know how to pray. Hoping to call you soon, I miss you so much!I was thrilled to read that Riley loves her auntie Rachel blankie. :o) I loved silkies when I was little, too. :o) Blowing kisses!! Love you guys!
-Rae
Happy Mother's Day, Kamzin!
ReplyDeleteTrusting you had a good 1st mother's day, my friend. :o)Love ya! Tell Riley that her auntie Rachel loves her too. <3
-Rae