OK, so I know you're not supposed to be glad when your children cry. But this was special. . . today was the first time Rayanna cried when I handed her over to the nursery worker at church! She knows I'm her mommy!!! Never have a child's tears made me feel so happy! (In case you're worried, she got over it very fast and proceeded to be the happiest baby in the nursery. So don't feel bad for her or anything!) =)
Today's also the 2-month anniversary of Gotcha Day. It was two months ago we first met our beautiful baby.
Sunday, September 25, 2011
Wednesday, September 14, 2011
The Boys
Our boys have some very different mile stones going on in their lives than the girls do. Thankfully, no medical issues (though Ethan will be needing some orthodontic work soon, which I'm sure will be an adventure). They've started this new school year with a bang! We're in our second week of school, and it's gone a lot better than expected so far! They've had mostly good attitudes, and (other than this afternoon) not as much fighting as had been going on during the summer. I guess if I work them hard enough they don't have time and energy for fighting! =)
We've also started some classes and activities that I'm really excited about. We rejoined CBS (Community Bible Study). This is a wonderful in-depth Bible study program with classes for the moms and the kids. Ethan's age even studies the same things as the adults, just at a different level. Ethan was very anxious about going, but once he got there he had a blast and can't wait to go back! Jesse and Tabitha liked their class as well, and Rayanna had the whole nursery to herself this week!
We also joined a homeschool soccer group. It's just once a week, which is perfect for us. Again, Ethan didn't want to go but ended up loving it! Jesse had a great time too, and I think they'll both really enjoy making friends on their teams. I know that PE is probably my weakest point as a homeschool teacher, so I'm really glad to have found something like this. I think it'll be some good fellowship for us all, as well as the exercise benefit.
Jesse also started Kindermusik, which I'm thrilled about. As a piano teacher obviously music education is important to me, and I just love the Kindermusik program for young kids! Jesse's been looking forward to it for the last couple years when Ethan was in it, and now it's finally his turn!
And, last but not least, Awana has started up again (not at our church, but the same one we've been going to the past two years). Ethan's in his last year of Sparks, Jesse's in his first year of Sparks, and Tabitha has started Cubbies. It's so great to hear them memorizing God's Word and see all that they're learning.
I think we have just the right balance. I don't like to be too busy as a family, but I also know that if we don't have enough going on we get stir-crazy. So far I think this feels just right. I'm excited for this new school year and all that the kids are and will be doing! And I'm very glad that as a homeschool mom I get to be involved in so many parts of their lives. They're growing up so fast, and I don't want to miss any of it!
We've also started some classes and activities that I'm really excited about. We rejoined CBS (Community Bible Study). This is a wonderful in-depth Bible study program with classes for the moms and the kids. Ethan's age even studies the same things as the adults, just at a different level. Ethan was very anxious about going, but once he got there he had a blast and can't wait to go back! Jesse and Tabitha liked their class as well, and Rayanna had the whole nursery to herself this week!
We also joined a homeschool soccer group. It's just once a week, which is perfect for us. Again, Ethan didn't want to go but ended up loving it! Jesse had a great time too, and I think they'll both really enjoy making friends on their teams. I know that PE is probably my weakest point as a homeschool teacher, so I'm really glad to have found something like this. I think it'll be some good fellowship for us all, as well as the exercise benefit.
Jesse also started Kindermusik, which I'm thrilled about. As a piano teacher obviously music education is important to me, and I just love the Kindermusik program for young kids! Jesse's been looking forward to it for the last couple years when Ethan was in it, and now it's finally his turn!
And, last but not least, Awana has started up again (not at our church, but the same one we've been going to the past two years). Ethan's in his last year of Sparks, Jesse's in his first year of Sparks, and Tabitha has started Cubbies. It's so great to hear them memorizing God's Word and see all that they're learning.
I think we have just the right balance. I don't like to be too busy as a family, but I also know that if we don't have enough going on we get stir-crazy. So far I think this feels just right. I'm excited for this new school year and all that the kids are and will be doing! And I'm very glad that as a homeschool mom I get to be involved in so many parts of their lives. They're growing up so fast, and I don't want to miss any of it!
The Girls
New accomplishments for both of our girls this week!
Yesterday, Rayanna had a developmental evaluation and an audiological evaluation at Kennedy Krieger. The audiology tests showed almost everything normal. One test (which I think measured the movement of the ear drum) was slightly different than it should've been. (It made a broad graph rather than a pointed one, whatever that means.) He said this could be due to the ear infection she had a few weeks ago, so he wants to retest her in 3 months. Other than that everything is normal, and her hearing responses were within the normal range. So she's definitely hearing! Praise the Lord!
Rayanna's developmental tests showed her to be around a 9-month level, meaning a 50% delay. This doctor also wants to see her again in 3 months to see if she's catching up. Only then would she be able to determine if there's any disability or if it's just a delay due to lack of stimulation. Our guess is that her delays are due to lying in a crib staring at the ceiling for her first 16 months of life! We really don't think there's anything wrong with her that love and attention won't fix. And, as if to prove what she can do, Rayanna took her first steps this afternoon! Two steps all by herself, and then she stayed there without falling over! We're so proud of her. :)
Tabitha, too, had a major accomplishment this week. Heath was giving her a bath yesterday, when she said "Daddy, there's poopy coming!" So he put her on the toilet, and sure enough . . . success!!!!! That's exciting for any young child's parents, but for a child who is 4 years old and not guaranteed to ever have bowel control???? That's REALLY exciting! Now, of course this could be a coincidence, just a fluke, so I'm trying not to get too excited. BUT, it could also be a major answer to prayer and evidence that she will indeed have full bowel control one day! Please continue to pray with us that that will be the case!
One more medical thing (as if there weren't enough). Last week I took Tabitha to the ENT to check her hearing (all normal), her nose bleeds (nothing too concerning), and her nasal speech. This doctor thinks that her nasal speech is caused by velopharyngeal dysfunction.He wants us to go to the cleft clinic at Johns Hopkins for further evaluation and possible surgery. Hooray. I can't wait. I find my reaction almost comical though. Looking back, I probably should've been a little upset or worried getting news like that. And before all we've been through with Tabitha I probably would have been. But it didn't even phase me! I almost expected it. Poor Tabitha . . . as if she hadn't had enough to deal with already! That appointment's on the 26th, and Rayanna's opthamology appointment is on the 27th. And that should be it for this month!
Yesterday, Rayanna had a developmental evaluation and an audiological evaluation at Kennedy Krieger. The audiology tests showed almost everything normal. One test (which I think measured the movement of the ear drum) was slightly different than it should've been. (It made a broad graph rather than a pointed one, whatever that means.) He said this could be due to the ear infection she had a few weeks ago, so he wants to retest her in 3 months. Other than that everything is normal, and her hearing responses were within the normal range. So she's definitely hearing! Praise the Lord!
Rayanna's developmental tests showed her to be around a 9-month level, meaning a 50% delay. This doctor also wants to see her again in 3 months to see if she's catching up. Only then would she be able to determine if there's any disability or if it's just a delay due to lack of stimulation. Our guess is that her delays are due to lying in a crib staring at the ceiling for her first 16 months of life! We really don't think there's anything wrong with her that love and attention won't fix. And, as if to prove what she can do, Rayanna took her first steps this afternoon! Two steps all by herself, and then she stayed there without falling over! We're so proud of her. :)
Tabitha, too, had a major accomplishment this week. Heath was giving her a bath yesterday, when she said "Daddy, there's poopy coming!" So he put her on the toilet, and sure enough . . . success!!!!! That's exciting for any young child's parents, but for a child who is 4 years old and not guaranteed to ever have bowel control???? That's REALLY exciting! Now, of course this could be a coincidence, just a fluke, so I'm trying not to get too excited. BUT, it could also be a major answer to prayer and evidence that she will indeed have full bowel control one day! Please continue to pray with us that that will be the case!
One more medical thing (as if there weren't enough). Last week I took Tabitha to the ENT to check her hearing (all normal), her nose bleeds (nothing too concerning), and her nasal speech. This doctor thinks that her nasal speech is caused by velopharyngeal dysfunction.He wants us to go to the cleft clinic at Johns Hopkins for further evaluation and possible surgery. Hooray. I can't wait. I find my reaction almost comical though. Looking back, I probably should've been a little upset or worried getting news like that. And before all we've been through with Tabitha I probably would have been. But it didn't even phase me! I almost expected it. Poor Tabitha . . . as if she hadn't had enough to deal with already! That appointment's on the 26th, and Rayanna's opthamology appointment is on the 27th. And that should be it for this month!
Saturday, September 10, 2011
Bundles
I recently read Sacred Parenting by Gary Thomas. He makes a point about trials coming in "bundles," many problems happening all at once. I liked what he said so much that I wanted to share a few paragraphs here. I've often noticed that when it rains it pours, but I've never thought of it the way he explains it before.
We have only one way to become mature and complete in God: We must develop the difficult but crucial discipline of perseverance. Jesus said that only through perseverance do we bear fruit: "The seed on good soil stands for those with a noble and good heart, who hear the word, retain it, and by persevering produce a crop." (Luke 8:15)
Paul says that character grows out of learning to persevere through many trials (Romans 5:3-4). James tells us that we should consider it "pure joy" when we "face trials of many kinds (that is, bundles), because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything." (James 1:2-4). Without perseverance, James tells us, we remain immature and incomplete, half-baked Christians, if you will. . . .
There's only one way to develop perseverance: We have to surrender to God as we feel pushed past the human breaking point. We have to reach the threshold of exhaustion, [been there done that], and then get pushed even further [been there too]. One trial can help us deal with fear. Two trials can lead to wisdom. But perseverance? That takes a bundle of difficulties. All of which means that parenting extremely demanding children feeds a spiritual need in our soul--to participate in the crucial discipline of perseverance on which our fruitfulness as believers depends.
We have only one way to become mature and complete in God: We must develop the difficult but crucial discipline of perseverance. Jesus said that only through perseverance do we bear fruit: "The seed on good soil stands for those with a noble and good heart, who hear the word, retain it, and by persevering produce a crop." (Luke 8:15)
Paul says that character grows out of learning to persevere through many trials (Romans 5:3-4). James tells us that we should consider it "pure joy" when we "face trials of many kinds (that is, bundles), because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything." (James 1:2-4). Without perseverance, James tells us, we remain immature and incomplete, half-baked Christians, if you will. . . .
There's only one way to develop perseverance: We have to surrender to God as we feel pushed past the human breaking point. We have to reach the threshold of exhaustion, [been there done that], and then get pushed even further [been there too]. One trial can help us deal with fear. Two trials can lead to wisdom. But perseverance? That takes a bundle of difficulties. All of which means that parenting extremely demanding children feeds a spiritual need in our soul--to participate in the crucial discipline of perseverance on which our fruitfulness as believers depends.
Sunday, September 4, 2011
Medical Details
Well, for most of you reading this, the summary will be enough: we're home, and so far things are going better than expected with the bowel issues. My emotional state is improved (in large part due to my supportive husband), and so far no major catastrophes to speak of.
For anyone wanting the (not so pretty) details, keep reading:
Dr. Levitt expected that after surgery Tabitha would be hypermotile . . . meaning the bowels move too fast. Usually for a few weeks patients are going too often, rather than not often enough. For some reason, Tabitha is having the opposite problem.
We have learned that constipation is a major enemy of people with colorectal malformations. Since the muscles don't work right, the person gets constipated. Constipation stretches out the colon and makes it work even less effectively, thus leading to worse constipation, and on it goes. So we're supposed to be very careful not to let Tabitha get constipated (which is part of the reason we do enemas). BUT, in this case, Dr. Levitt said that having constipation rather than diarrhea right after this surgery, is a good sign. Constipation is much easier to control than is its opposite. So this could bode well for the future.
However, right now our main concern is getting her UNconstipated. The enemas haven't been thoroughly working, though today there's been some progress. Once that's taken care of, it could all change. We don't know which battle we'll be fighting (hypermotility or hypomotility), or if she'll be able to regulate just by diet or will need enemas for life. We are to continue enemas for the next couple of months while her digestive system learns how to function again after having the summer off. Then we can stop the enemas and see if we can regulate her enough (with diet and possibly laxatives) to achieve potty training potential. If that doesn't work out and it looks like she'll need enemas for life, they recommend getting a Malone, which is a valve through the tummy which makes it so that she can give herself the enemas without needing assistance. But we are praying that she will be able to have bowel control and not need any of that.
In about a month, we'll get a kidney ultrasound done and sent to Dr. Alam so that he can plan the next step for her kidneys. She'll definitely need one more surgery, but when and what exactly needs to happen are still to be determined. It appears that (apart from a miracle) she'll always need to use a catheter. That isn't as big of a deal as the bowel issues, so I'm not too upset about that.
Tabitha is doing really well and healing fast. She hasn't had any pain medicine since the day after the surgery, which I find amazing. I think I'd be on morphine and bed rest for weeks! She's got a big long incision on her belly, but it doesn't seem to slow her down at all. In another 10 days she'll be allowed to swim again, which I know will make her very happy. And she's also very happy to be able to eat all the things she couldn't have with the ileostomy. She's been through a lot, but never gives up. She's a little trooper!
For anyone wanting the (not so pretty) details, keep reading:
Dr. Levitt expected that after surgery Tabitha would be hypermotile . . . meaning the bowels move too fast. Usually for a few weeks patients are going too often, rather than not often enough. For some reason, Tabitha is having the opposite problem.
We have learned that constipation is a major enemy of people with colorectal malformations. Since the muscles don't work right, the person gets constipated. Constipation stretches out the colon and makes it work even less effectively, thus leading to worse constipation, and on it goes. So we're supposed to be very careful not to let Tabitha get constipated (which is part of the reason we do enemas). BUT, in this case, Dr. Levitt said that having constipation rather than diarrhea right after this surgery, is a good sign. Constipation is much easier to control than is its opposite. So this could bode well for the future.
However, right now our main concern is getting her UNconstipated. The enemas haven't been thoroughly working, though today there's been some progress. Once that's taken care of, it could all change. We don't know which battle we'll be fighting (hypermotility or hypomotility), or if she'll be able to regulate just by diet or will need enemas for life. We are to continue enemas for the next couple of months while her digestive system learns how to function again after having the summer off. Then we can stop the enemas and see if we can regulate her enough (with diet and possibly laxatives) to achieve potty training potential. If that doesn't work out and it looks like she'll need enemas for life, they recommend getting a Malone, which is a valve through the tummy which makes it so that she can give herself the enemas without needing assistance. But we are praying that she will be able to have bowel control and not need any of that.
In about a month, we'll get a kidney ultrasound done and sent to Dr. Alam so that he can plan the next step for her kidneys. She'll definitely need one more surgery, but when and what exactly needs to happen are still to be determined. It appears that (apart from a miracle) she'll always need to use a catheter. That isn't as big of a deal as the bowel issues, so I'm not too upset about that.
Tabitha is doing really well and healing fast. She hasn't had any pain medicine since the day after the surgery, which I find amazing. I think I'd be on morphine and bed rest for weeks! She's got a big long incision on her belly, but it doesn't seem to slow her down at all. In another 10 days she'll be allowed to swim again, which I know will make her very happy. And she's also very happy to be able to eat all the things she couldn't have with the ileostomy. She's been through a lot, but never gives up. She's a little trooper!
Friday, September 2, 2011
My Goal
This song meant a lot to me when we were waiting to adopt Tabitha. Now its message returns as I wait to make it through all these medical issues. My goal is that the attitude of my heart would match the lyrics of this song and that I would just take one step at a time in obedience, even when God's plans don't match my own.
Thursday, September 1, 2011
Update on Tabitha
Tabitha's recovery has gone well. She's eating real food now, and it's coming out in the right place. =) So I guess that's progress. :) Heath's been with her the whole time, with the rest of us just coming to visit. I was going to spend the night with her tonight, but since I was having a meltdown Heath offered to stay again. Why the meltdown? I'm just really worried about what's coming up. For the next couple months it appears we have to do enemas (hour-long process every day), strictly monitor her diet, go back to cathing every 4 hours, and STILL be dealing with messy diapers on a 4-year-old. I don't even understand most of what's going on in her body, and I know it's temporary, but it feels like a step backwards. I had been excited about starting our new homeschooling year when we get back, even with a new toddler in the house. But now we get to add all this to our school year and outside activities, and I just don't see that working out so well. Please pray that God somehow gives me the emotional energy to handle all of this.
Yesterday when we went to visit Tabitha she was feeling pretty well, but extremely emotional. I think the medication is really affecting her head. We brought her a big balloon, and she thanked us by demanding that Ethan give it to her now! And she bit the head off anyone who touched her toys or balloons. She was pretty mean and feisty the whole time, but then she got very sensitive. The nurse came to check on her and asked if she needed anything. When the nurse asked her if she wanted to get up, she said she'd do it tomorrow. The nurse asked her to "pinky promise" and held out her pinky. I told Tabitha to give her her pinky, and she looked down at her box of markers and said, "But I don't have pink!" We all laughed at her cute misunderstanding. But then Tabitha got all teary-eyed and said "You hurt my feelings. You laughed at me." Her emotions are fluctuating quite drastically right now!
The other kids have had fun at the hotel this week. Rayanna absolutely loves the pool! She has no fear, constantly dunks her head in the water and tries to get away from me and swim on her own! The boys are having a blast there too. We also went to the Cincinnati Museum Center today. They have 3 great museums there, and we enjoyed them all! I've also really enjoyed having my mom and my friend Kelly here for the extra help and support. I'm not sure that Heath and Tabitha have had all that much fun, but they've accomplished what we came for. :)
Looking forward to going home, but all in all it's been a good trip.
Yesterday when we went to visit Tabitha she was feeling pretty well, but extremely emotional. I think the medication is really affecting her head. We brought her a big balloon, and she thanked us by demanding that Ethan give it to her now! And she bit the head off anyone who touched her toys or balloons. She was pretty mean and feisty the whole time, but then she got very sensitive. The nurse came to check on her and asked if she needed anything. When the nurse asked her if she wanted to get up, she said she'd do it tomorrow. The nurse asked her to "pinky promise" and held out her pinky. I told Tabitha to give her her pinky, and she looked down at her box of markers and said, "But I don't have pink!" We all laughed at her cute misunderstanding. But then Tabitha got all teary-eyed and said "You hurt my feelings. You laughed at me." Her emotions are fluctuating quite drastically right now!
The other kids have had fun at the hotel this week. Rayanna absolutely loves the pool! She has no fear, constantly dunks her head in the water and tries to get away from me and swim on her own! The boys are having a blast there too. We also went to the Cincinnati Museum Center today. They have 3 great museums there, and we enjoyed them all! I've also really enjoyed having my mom and my friend Kelly here for the extra help and support. I'm not sure that Heath and Tabitha have had all that much fun, but they've accomplished what we came for. :)
Looking forward to going home, but all in all it's been a good trip.
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