Firstly, I want to thank all of you for your diligent prayers over the last week. I know there were a lot of you praying for us and for a good day today.
It's been a really tough day. Elena aspirated on her third swallow. It wasn't a large amount, but any aspiration is not good. She did fine for seven more swallows and did fine with her puffs. They didn't even want to try liquids.
This is a huge disappointment. My heart broke for Elena. She has worked so, so hard over the last eight months, relearning how to eat. To get a big F on the third swallow is just heart breaking. She was such a big girl today, not intimidated by all the people and big machines. She took her bites so well. I'm so proud of her. I just wish the outcome would have been different.
I felt like I had prepared myself for some level of bad news, but both her therapist and I did not expect her to have trouble with the food. She's been completely healthy for eight months, never coughs during feeds and has improved drastically with the amount and time it takes her to eat. We just don't know what happened.
I'm so thankful that Elena has the best speech therapist. She was there every step today, supporting and encouraging me despite the bad news. She is determined to make Elena an eater.
I KNOW how far Elena has come since November and I KNOW there are certain to be disappointments along the way, but it still hurts. I just can't help but think how hard it is for Elena to eat...something we all take for granted every day. It just isn't fair. One step up, two steps back. My poor, sweet baby. We don't think the doctor will cut her off food, which would be worst-case scenario, but we certainly won't be moving forward. We'll just keep working with her and praying that she'll continue to get stronger every day.
Friday, August 31, 2012
Monday, August 27, 2012
Finishing Strong
Here we are, another month gone by...the last week of August. What a wild month it has been.
We started the month praying the Botox would do great things for Elena...and it has! We continue to see such an improvement on her legs. We've prayed and prayed that it would be a "game changer" and it's too early to call but we've been ecstatic with what we've seen. Her legs are so maneuverable now. It must be such a relief for her not to constantly be in extension, tiring those poor muscles!
She is now in therapy five days a week. It's a bit exhausting, having something every single day. I'm constantly watching the clock to make sure she gets good naps each day, so she can be ready to work hard in her therapy sessions. It's pretty limiting, too, on what we're able to do outside of the house but seeing that her recovery is our absolute priority, I'm willing to do anything for her.
As of today, we've officially said goodbye to the three-hour eating schedule! Woooohooooo! Since those last few days at Riley, we've spent hundreds of hours with Elena on our lap every 2.5 hours for a 30 minute tube feeding. I'm afraid to actually calculate the actual amount of time we've spent feeding her over the last 10 months. Our lives have been on an 8am, 11am, 2pm, 5pm, 8pm schedule for far too long! She's been tolerating her toddler formula much better so we have bumped up her volume and are now on a 4-hour schedule which is going to be GREAT!
We met with Elena's Neurologist last Friday. It was a bit better than I had anticipated. She was happy that we haven't seen any problematic seizure activity, so Elena will continue to stay off her seizure medication for now. She is still at an extremely high risk, so we'll pray she'll continue to be seizure-free. We are still disappointed that Elena has yet to have any head growth. It's certainly one of the harder things we've had to accept. It doesn't mean that she won't ever have any growth, but the doctors would have liked to seen some by now. But, all we can do is continue to pray, rejoice in every bit of new progress that she makes and savor every smile and giggle she gives us.
This week rounds out our big month. We see a new GI doctor and have her swallow study at the end of the week. Please continue to keep us in your prayers this week. Friday will be a very anxious day. Elena has had a bad cold all weekend, so pray that it's all cleared up by Friday so she won't have anything else complicating her eating.
I want to end on a good note and show you some huge progress Elena has had in the last week or so. She's had a sudden burst of head control/strength! I remember putting her on her tummy one day and her little head shot right up to watch her beloved Tigger do some bouncing! Since then, we've noticed a huge leap in her ability to hold her head/torso up longer and higher. This is HUGE for her development. Little prayers like this, that we've been praying for months are being answered!
We started the month praying the Botox would do great things for Elena...and it has! We continue to see such an improvement on her legs. We've prayed and prayed that it would be a "game changer" and it's too early to call but we've been ecstatic with what we've seen. Her legs are so maneuverable now. It must be such a relief for her not to constantly be in extension, tiring those poor muscles!
She is now in therapy five days a week. It's a bit exhausting, having something every single day. I'm constantly watching the clock to make sure she gets good naps each day, so she can be ready to work hard in her therapy sessions. It's pretty limiting, too, on what we're able to do outside of the house but seeing that her recovery is our absolute priority, I'm willing to do anything for her.
As of today, we've officially said goodbye to the three-hour eating schedule! Woooohooooo! Since those last few days at Riley, we've spent hundreds of hours with Elena on our lap every 2.5 hours for a 30 minute tube feeding. I'm afraid to actually calculate the actual amount of time we've spent feeding her over the last 10 months. Our lives have been on an 8am, 11am, 2pm, 5pm, 8pm schedule for far too long! She's been tolerating her toddler formula much better so we have bumped up her volume and are now on a 4-hour schedule which is going to be GREAT!
We met with Elena's Neurologist last Friday. It was a bit better than I had anticipated. She was happy that we haven't seen any problematic seizure activity, so Elena will continue to stay off her seizure medication for now. She is still at an extremely high risk, so we'll pray she'll continue to be seizure-free. We are still disappointed that Elena has yet to have any head growth. It's certainly one of the harder things we've had to accept. It doesn't mean that she won't ever have any growth, but the doctors would have liked to seen some by now. But, all we can do is continue to pray, rejoice in every bit of new progress that she makes and savor every smile and giggle she gives us.
This week rounds out our big month. We see a new GI doctor and have her swallow study at the end of the week. Please continue to keep us in your prayers this week. Friday will be a very anxious day. Elena has had a bad cold all weekend, so pray that it's all cleared up by Friday so she won't have anything else complicating her eating.
I want to end on a good note and show you some huge progress Elena has had in the last week or so. She's had a sudden burst of head control/strength! I remember putting her on her tummy one day and her little head shot right up to watch her beloved Tigger do some bouncing! Since then, we've noticed a huge leap in her ability to hold her head/torso up longer and higher. This is HUGE for her development. Little prayers like this, that we've been praying for months are being answered!
(Excuse the bed head, we were just up from a nap!)
Hard to see them here, but she's sporting her first pig tails!
Playing with Daddy before bedtime
Trying to sit up like a big girl!
Yay for new skills!
P.S. Thanks to those of you who sent us messages/notes this past week. You blessed us beyond belief. I'm always amazed at the lives (even of those we've never met!) Elena continues to touch. God has given her such an amazing story with a purpose!
Monday, August 20, 2012
Being Grateful
This roller coaster we have been on for the last nine months is constantly sending us soaring high and dipping low. Often times, all in one day, I will cry because I'm happy and because I'm sad. I'll be so excited about something Elena did that day and full of sorrow the next because I'm reminded of how far she has to go. It's such an emotional ride.
In the midst of sorting through all the emotions, I find that most the time I feel so very grateful. I'm grateful that Elena is here, alive. I'm grateful that I get to spend my days with this precious child. I'm grateful that we have so much love and support always surrounding us. I'm grateful that despite the horrible things we have had to face, God has blessed us with His grace and mercy every day.
Even more simply, I'm grateful that Elena looks at me, making eye contact. I'm grateful that she smiles and coos at me when I'm silly. I'm grateful that she laughs when I tickle her or the most recent fave...when we make animal sounds. I'm grateful for the simplest of things, because I know that there are parents who live without these tiny gestures from their children every day. Elena continues to be one of the happiest, sweetest, most loving little babies....not to mention so cute!
For this, I'm grateful.
In the midst of sorting through all the emotions, I find that most the time I feel so very grateful. I'm grateful that Elena is here, alive. I'm grateful that I get to spend my days with this precious child. I'm grateful that we have so much love and support always surrounding us. I'm grateful that despite the horrible things we have had to face, God has blessed us with His grace and mercy every day.
Even more simply, I'm grateful that Elena looks at me, making eye contact. I'm grateful that she smiles and coos at me when I'm silly. I'm grateful that she laughs when I tickle her or the most recent fave...when we make animal sounds. I'm grateful for the simplest of things, because I know that there are parents who live without these tiny gestures from their children every day. Elena continues to be one of the happiest, sweetest, most loving little babies....not to mention so cute!
For this, I'm grateful.
Wednesday, August 15, 2012
Loosey Goosey
The first stressful appointment of the month went very smoothly last week. Thanks for all your sweet messages and prayers! Elena handled the injections much better than I did (per usual). Luckily, Chad was working from home that day and was able to go to the appointment with me. So while I was trying to calm Elena, he could calm me :)
They injected her four times in her inner thighs. Chad and I noticed results the next morning when changing her diaper. I can't tell you how difficult a task it can be when her legs are are locked and extended. It was amazing to see her little legs flop around without much resistance! We call it being "Loosey Goosey!" Over the last week, we have been in awe of the difference four little injections have made. Now we just have to work on strengthening those muscles with therapy!
We enjoyed some relaxation this past week too. We were lucky to spend some time with Chad's best friend and his family up at their lakehouse in Charlevoix, Michigan. They live on the west coast so we don't get to see them very often, but it was great to relax and enjoy! It was officially our first family vacation. Elena did great with the 7 hour drive and enjoyed the view from the deck at each feeding.
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Another answer to prayer has been Elena's reflux. For whatever reason (I'll chalk it up to your prayers!), we've seen a big improvement. While she still struggles with the "refluxing", she's had only one small vomit in the last week. We were getting used to one a day, so that's a HUGE improvement!
She has a Neurology appointment next week that we'll need your prayers for. And keep praying for her swallow study at the end of the month. She had a terrible speech appointment last week, which of course gets me even more anxious for her swallow study. So pray, pray, pray!
Last but not least........they have arrived. Elena's teeth that is! She finally cut her first tooth and is working on #2 and #3! It only took 13 months :) In true Laney form, she's pretty indifferent about them, doesn't fuss and not too much extra slobber. Always cool as a cucumber, that girl!
They injected her four times in her inner thighs. Chad and I noticed results the next morning when changing her diaper. I can't tell you how difficult a task it can be when her legs are are locked and extended. It was amazing to see her little legs flop around without much resistance! We call it being "Loosey Goosey!" Over the last week, we have been in awe of the difference four little injections have made. Now we just have to work on strengthening those muscles with therapy!
We enjoyed some relaxation this past week too. We were lucky to spend some time with Chad's best friend and his family up at their lakehouse in Charlevoix, Michigan. They live on the west coast so we don't get to see them very often, but it was great to relax and enjoy! It was officially our first family vacation. Elena did great with the 7 hour drive and enjoyed the view from the deck at each feeding.
Our view
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Laney's first boat ride...she LOVED it!
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Erin & Holden with Laney & me boating to lunch
She has a Neurology appointment next week that we'll need your prayers for. And keep praying for her swallow study at the end of the month. She had a terrible speech appointment last week, which of course gets me even more anxious for her swallow study. So pray, pray, pray!
Thursday, August 2, 2012
Big Month, Big Nerves
It's going to be a big, big month. We're going to need lots of prayers! I'm already anxious about all the appointments we have in August. It really feels like the next couple of months will be very telling of Elena's prognosis for her long term recovery. As I mentioned before, it has seemed that things have been coming together. We've had lots of different issues floating around, while Chad and I have been trying to wrangle them and get everything under control. It finally appears that we're on the right track and things are getting resolved.
Next week, the 9th, Elena will finally be getting her Botox injections. We have VERY high hopes for this procedure. Right now, Elena's tone is really dictating her progress. It's been a vicious cycle of...she can't do this...because she can't do that...and because she can't do that....she can't do this....and so on. It all comes back to getting her muscle tone under control. We are praying the Botox can give her the edge she needs to overcome the nasty muscle tone that keeps her so rigid and uncomfortable. Ideally, once her tone gets under control, she'll have an easier time with her motility, hence making progress in just about every other area we've been working. So, prayer request #1 (of many!) is that the injection process goes well (for Elena and Mommy who has to watch her baby get injected many times). #2 is that we get the desired effects from the medication and we see some great progress.
Since we're beginning the Botox treatment, we're upping her physical therapy each week. We have a Home Health company coming out next week to evaluate Elena and begin more therapy 1-2x more per week. That means saying goodbye to more "free" time each week. Elena will have PT 2-3x per week in addition to her Speech and OT. Therapy 5x per week seems pretty daunting at the moment. But...anything to give my girl an extra edge. #3 pray that we can manage this increase in therapy and more importantly that Elena shows some good improvement.
We have a swallow study scheduled for the end of the month. This is huge. We've come a very long way since we began oral feeding in January. We could barely manage a few squirts of an eyedropper then. Now, we're working on liquids, puffs and spoon feeding. I'm very, very anxious about this test. It will give us much more information on Elena's swallowing abilities. This test will dictate Elena's feeding for the foreseeable future. I just don't think Chad and I can take any more setbacks at this point. So #4 pray, pray, pray that Elena can give a good test and there won't be any major issues revealed. I'm already nervous just writing about this!
Lastly, Elena has two major doctor appointments this week. The biggest of the two is her first appointment with a GI Specialist. As you know, we've been fighting horrible, awful, raging reflux since getting her G-tube. I can't even explain to you how heartbreaking it is to see her struggle with this. Nothing has helped. She's been on three different meds, special formula, sleeps on an incline and still fights it all day and all night. #5 pray that the doctor will be helpful and offer up good solutions other than more surgery. In all my research, I'm aware of the surgical options and I really, really, really don't want to have Elena go through any more hospital trauma.
Her other appointment is with her Neurologist. We don't expect anything major, since she's done great being off the Phenobarbital. However, EVERY doctor appointment is anxiety-ridden and since she still hasn't had any head growth, we don't want to hear any more bad news. #6 pray for her sweet, little head. It's heartbreaking every time they pull out that tape measure.
As you can see, I'm likely to be a ball of nerves all month long. We so appreciate your prayers and notes. Just this week, I received a card from a dear family that, even though I haven't seen in probably 10 years, I think about very, very often. You have no idea how much those mean to us. So, thank you again from the bottom of our hearts for all of your love, support and encouragement. It helps us stay positive and keep going.
Next week, the 9th, Elena will finally be getting her Botox injections. We have VERY high hopes for this procedure. Right now, Elena's tone is really dictating her progress. It's been a vicious cycle of...she can't do this...because she can't do that...and because she can't do that....she can't do this....and so on. It all comes back to getting her muscle tone under control. We are praying the Botox can give her the edge she needs to overcome the nasty muscle tone that keeps her so rigid and uncomfortable. Ideally, once her tone gets under control, she'll have an easier time with her motility, hence making progress in just about every other area we've been working. So, prayer request #1 (of many!) is that the injection process goes well (for Elena and Mommy who has to watch her baby get injected many times). #2 is that we get the desired effects from the medication and we see some great progress.
Since we're beginning the Botox treatment, we're upping her physical therapy each week. We have a Home Health company coming out next week to evaluate Elena and begin more therapy 1-2x more per week. That means saying goodbye to more "free" time each week. Elena will have PT 2-3x per week in addition to her Speech and OT. Therapy 5x per week seems pretty daunting at the moment. But...anything to give my girl an extra edge. #3 pray that we can manage this increase in therapy and more importantly that Elena shows some good improvement.
We have a swallow study scheduled for the end of the month. This is huge. We've come a very long way since we began oral feeding in January. We could barely manage a few squirts of an eyedropper then. Now, we're working on liquids, puffs and spoon feeding. I'm very, very anxious about this test. It will give us much more information on Elena's swallowing abilities. This test will dictate Elena's feeding for the foreseeable future. I just don't think Chad and I can take any more setbacks at this point. So #4 pray, pray, pray that Elena can give a good test and there won't be any major issues revealed. I'm already nervous just writing about this!
Lastly, Elena has two major doctor appointments this week. The biggest of the two is her first appointment with a GI Specialist. As you know, we've been fighting horrible, awful, raging reflux since getting her G-tube. I can't even explain to you how heartbreaking it is to see her struggle with this. Nothing has helped. She's been on three different meds, special formula, sleeps on an incline and still fights it all day and all night. #5 pray that the doctor will be helpful and offer up good solutions other than more surgery. In all my research, I'm aware of the surgical options and I really, really, really don't want to have Elena go through any more hospital trauma.
Her other appointment is with her Neurologist. We don't expect anything major, since she's done great being off the Phenobarbital. However, EVERY doctor appointment is anxiety-ridden and since she still hasn't had any head growth, we don't want to hear any more bad news. #6 pray for her sweet, little head. It's heartbreaking every time they pull out that tape measure.
As you can see, I'm likely to be a ball of nerves all month long. We so appreciate your prayers and notes. Just this week, I received a card from a dear family that, even though I haven't seen in probably 10 years, I think about very, very often. You have no idea how much those mean to us. So, thank you again from the bottom of our hearts for all of your love, support and encouragement. It helps us stay positive and keep going.