Today was a crazy day, but a nice day too. We woke up, did our morning routine, worked on homeschooling, went for a walk, then it was off to the doctor for Ramya and I. Madi's respite worker, Amy, came to help out with the other two squirrels for a bit while I was gone and before David got off work at two to take over. First was an ultrasound, followed by an appointment with the urologist (more to come on that soon). After that we hustled out a CT scan and x-ray series to check her shunt. The last two tests are in preparation for her upcoming neurosurgeon appointment, where we will make sure all is well with her shunt.
There was some good news and some bad news at the urology appointment. The good news is that her kidneys look good. There were no abnormalities or anything found, and her kidneys seem to be working well. The doctor said her mitrofanoff is open and working, but the reason I can't get anything out of it is because of her constant leaking. Madi is cathed through the urethra (what I call the "normal" way, since it's normal to us ;)) four times a day. She pretty much stays dry between cathings. Her bladder is very slightly spastic, but mostly is not. It grows on it's own little curve and holds a decent amount of liquid. Ramya is a whole new story, though. She leaks like crazy and I get almost nothing out because she leaks so much. I feel like I constantly change her and she is constantly wet. She seems to hold very very little urine. For example, today I cathed her "the normal way" in the morning. She was soaking wet and I got very little out. I skipped her early afternoon cathing as I was trying to keep her full for her ultrasound. I just changed her and left for the doctor. I gave her tons of water, as she was supposed to drink a ton for the ultrasound. When we got there, she was wet again, but the tech said there was almost nothing in her bladder. We cathed her a little later so the doctor could try her mitrofanoff, and we got almost nothing out. Apparently this isn't really what they like to see, as we can't really achieve "social continence" like that. The urologist wants her to be on dithropan (which she was on in the orphanage) to see if we can get her leaking under control. Madi had terrible reactions to dithropan and is doing fine without it, so we have kept her off and just monitor her closely. Looks like Ramya seems to be one of those kiddos who needs it, though. He said we also need to do a urodynamics study and a VCUG to see just how much she can hold, to see if her muscles are just too week to hold things in, and to see if she still has renal reflux (among a few other things).
He's a little confused at the motrofanoff surgery she went through. Normally they go in and attach part of the intestines (I think that's what he said ;)) to the bladder to help it not be spastic and also to help it hold more liquid (again, I think that's what he said, I am sure some of you out there can help me explain this a little better ;)). He doesn't think that part was done, and he has no idea why they wouldn't do that part too. He said he needs to do the other two studies, in addition to the reasons posted above, to help him figure out exactly what they did do, and why they did what they did. Basically he's stumped and thinks she really needed that part of the surgery and will need another surgery since that part wasn't done. Drat. He's also stumped by her MACE surgery. He said it isn't in the typical spot and he doesn't know why they put it where they did, or if it will even work right how they did it. Double drat. He's going to take a better look at that later, but said not to use it for now.
Ramya did well with all of the testing and I think it also helped our bonding. I stayed close and held her hand during the tests, assuring her that they would not hurt. She seemed to trust me and want me close, so that made my momma heart happy. I, of course, carried her around the hospital for all of her testing and she sat on my lap while we waited. She seemed to enjoy the one-on-one time, though it wasn't for a fun reason. They also realized it was her birthday and let her pick a little gift. She picked a Littlest Pet Shop set with a girl doll in vintage clothing and a spider pet with a vintage hat. She was very excited about it all! They also gave her a little snack (goldfish crackers and fruit snacks) which she was happy about. Overall we were gone quite a bit, from about 11:45 am until about 5:30 pm.
Poor Conner isn't doing well with having me gone so much. He now has my cell phone number memorized and calls me a lot while I'm away. I don't mind and happily take his calls when I can, because I know it helps him feel better. Today was a call about a big scratch he found on his foot that he doesn't know how he got. He thought I needed to know and would want to look at it when I got home. I assured him I would examine it and kiss it when I returned home, and I did. He called about 3 other times, but I was only able to answer 1 other time. He played with Amy and Madi a bit, but mostly said he wanted alone time and sat in the garage. When I got home he told me he prayed for God to bring me home faster :(. Poor little guy. He did have fun going to the movies with David, so that is good, but I think I'm going to have to figure out a little mommy/son date this weekend. He is seeming to really need some time with me.
Now to the FUN part of our day! After dinner (thank GOD for leftovers that came from amazing friends who have been gifting us with yummy food!!) we gave Ramya her presents from us and did cake. I am the lamest mom ever and she got a piece of pre-made, individually sold, cake from the store. She loved it, though, and, literally, devoured every single bite! I am throwing a family party on Sunday that will be the princess and the frog theme, so she will get a nice birthday party soon. I am thankful that she was happy with her little party this evening, though, since I felt like I didn't do a very good job celebrating. She enjoyed being sung Happy Birthday so much that she started singing it to herself too! She loved all her gifts, but especially loved her baby doll and the outfit for it. I had purchased it for her at a little toy shop by our house that was going out of business and was clearancing everything out. I've been saving it for her and I'm so glad she loved it! Both she and the baby are happily sleeping in our bed as we speak :). I'm not sure if she's ever had her birthday celebrated before, but I am thrilled that she was able to come home in time for us to celebrate her!
There was some good news and some bad news at the urology appointment. The good news is that her kidneys look good. There were no abnormalities or anything found, and her kidneys seem to be working well. The doctor said her mitrofanoff is open and working, but the reason I can't get anything out of it is because of her constant leaking. Madi is cathed through the urethra (what I call the "normal" way, since it's normal to us ;)) four times a day. She pretty much stays dry between cathings. Her bladder is very slightly spastic, but mostly is not. It grows on it's own little curve and holds a decent amount of liquid. Ramya is a whole new story, though. She leaks like crazy and I get almost nothing out because she leaks so much. I feel like I constantly change her and she is constantly wet. She seems to hold very very little urine. For example, today I cathed her "the normal way" in the morning. She was soaking wet and I got very little out. I skipped her early afternoon cathing as I was trying to keep her full for her ultrasound. I just changed her and left for the doctor. I gave her tons of water, as she was supposed to drink a ton for the ultrasound. When we got there, she was wet again, but the tech said there was almost nothing in her bladder. We cathed her a little later so the doctor could try her mitrofanoff, and we got almost nothing out. Apparently this isn't really what they like to see, as we can't really achieve "social continence" like that. The urologist wants her to be on dithropan (which she was on in the orphanage) to see if we can get her leaking under control. Madi had terrible reactions to dithropan and is doing fine without it, so we have kept her off and just monitor her closely. Looks like Ramya seems to be one of those kiddos who needs it, though. He said we also need to do a urodynamics study and a VCUG to see just how much she can hold, to see if her muscles are just too week to hold things in, and to see if she still has renal reflux (among a few other things).
He's a little confused at the motrofanoff surgery she went through. Normally they go in and attach part of the intestines (I think that's what he said ;)) to the bladder to help it not be spastic and also to help it hold more liquid (again, I think that's what he said, I am sure some of you out there can help me explain this a little better ;)). He doesn't think that part was done, and he has no idea why they wouldn't do that part too. He said he needs to do the other two studies, in addition to the reasons posted above, to help him figure out exactly what they did do, and why they did what they did. Basically he's stumped and thinks she really needed that part of the surgery and will need another surgery since that part wasn't done. Drat. He's also stumped by her MACE surgery. He said it isn't in the typical spot and he doesn't know why they put it where they did, or if it will even work right how they did it. Double drat. He's going to take a better look at that later, but said not to use it for now.
Ramya did well with all of the testing and I think it also helped our bonding. I stayed close and held her hand during the tests, assuring her that they would not hurt. She seemed to trust me and want me close, so that made my momma heart happy. I, of course, carried her around the hospital for all of her testing and she sat on my lap while we waited. She seemed to enjoy the one-on-one time, though it wasn't for a fun reason. They also realized it was her birthday and let her pick a little gift. She picked a Littlest Pet Shop set with a girl doll in vintage clothing and a spider pet with a vintage hat. She was very excited about it all! They also gave her a little snack (goldfish crackers and fruit snacks) which she was happy about. Overall we were gone quite a bit, from about 11:45 am until about 5:30 pm.
Poor Conner isn't doing well with having me gone so much. He now has my cell phone number memorized and calls me a lot while I'm away. I don't mind and happily take his calls when I can, because I know it helps him feel better. Today was a call about a big scratch he found on his foot that he doesn't know how he got. He thought I needed to know and would want to look at it when I got home. I assured him I would examine it and kiss it when I returned home, and I did. He called about 3 other times, but I was only able to answer 1 other time. He played with Amy and Madi a bit, but mostly said he wanted alone time and sat in the garage. When I got home he told me he prayed for God to bring me home faster :(. Poor little guy. He did have fun going to the movies with David, so that is good, but I think I'm going to have to figure out a little mommy/son date this weekend. He is seeming to really need some time with me.
Now to the FUN part of our day! After dinner (thank GOD for leftovers that came from amazing friends who have been gifting us with yummy food!!) we gave Ramya her presents from us and did cake. I am the lamest mom ever and she got a piece of pre-made, individually sold, cake from the store. She loved it, though, and, literally, devoured every single bite! I am throwing a family party on Sunday that will be the princess and the frog theme, so she will get a nice birthday party soon. I am thankful that she was happy with her little party this evening, though, since I felt like I didn't do a very good job celebrating. She enjoyed being sung Happy Birthday so much that she started singing it to herself too! She loved all her gifts, but especially loved her baby doll and the outfit for it. I had purchased it for her at a little toy shop by our house that was going out of business and was clearancing everything out. I've been saving it for her and I'm so glad she loved it! Both she and the baby are happily sleeping in our bed as we speak :). I'm not sure if she's ever had her birthday celebrated before, but I am thrilled that she was able to come home in time for us to celebrate her!
Opening gifts is so fun!
Sister, what did you get???
My favorite birthday gift!
We had to change the clothing right away ;)
Blowing out her candle (she didn't want to go to the table and wanted to stay sitting with her baby in her lap, so I complied ;))
Finger-licking-good!
Many people have asked how I'm doing, so I thought I'd just tell everyone at once. If you see me, you will likely think I look tired. It's for a great reason... I'm tired! Ha! I don't think I've slept amazingly for, say, 6 years or so (wait, how old is Conner again ;)). It's more than that, though, (because actually my kiddos are pretty good sleepers, thankfully!!). I'm just tired because our days are busier right now. Even just being home is busier. There is more holding and lifting and more emotional "stuff" lately. There are more phone calls to figure out appointments and insurance and all that fun stuff in there too. There are adoption reports due and meetings with our post-adoption agency. There is lots of running around and appointments, though I put off anything I can. Conner and Madi have regressed a little and are needing more momma time. And, amongst all of that, there is the typical hustle and bustle of life and housework. There is also time with my hubby, which is just so needed and important, and worth every second! I am thankful, though, that being a mom, and especially a mom of a child with special needs who needs occasional ambulance rides and hospital stays, has well-prepared me for life's busyness. I have this supernatural ability to run effectively on minimal sleep, to go abnormal amounts of time with no food, water, shower, bathroom, etc..., and be able to manage a household and retain information (mostly ;)) from the doctors. I am, of course, exaggerating a bit, as really, I am taking pretty good care of myself. I make sure to sleep 7-8 hours a night, eat healthy(ish... lately I've been not doing very good in this area) meals, exercise, and get some "me" time in once everyone else has gone to bed. However, I am still drained. A second cup of coffee in the afternoon (if Starbucks wasn't so expensive, I'd have a major addiction going on there) has become part of my new routine and keeps me going. I have started biting my nails again and am back down to sad little stubs. I am happy to say, though, that I am still going, mostly with a smile on my face, and that is what matters!
Another question I get a lot is how people can pray for us. Here are some ways you can pray...
- That we can find peace and joy amongst our doctors appointments and the things taking us out of the home
- For Conner and Madi as they adjust to me being gone a little more (thankfully this should taper off a bit after we get over this first hump of appointments)
- For our bonding and attachment as a family as we try to balance it all
- For grace for ourselves, as well for all of our kiddos, as we travel this journey together
- That we can get Ramya on long-term care
I'm sure I have lots more, but I'm getting tired and can't think of them all right now! I want to update everyone on how our attachment is going too, but that will just have to wait for another night :).
I loved reading this. I love her birthday smile. I love your story. :) Thank you for sharing! <3
ReplyDeletehappy birthday to Ramya from Raju! and us too of course!
ReplyDeleteLamest mom?? Um, I'm pretty sure you are Super Mom! Seriously. You are doing great and Ramya's face says it all...SO happy. Praying for your attachment and doctor's appointments. I know that's a lot to deal with all at once. Also praying for Conner's sweet heart. Sounds like everyone needs you all at once right now.
ReplyDelete