After a phone call yesterday at 11am with no info from the doctor and a promise of a call back later on, I was discouraged. My mood got worse when it hit 5pm and no call back. I called again and left a message. At 6pm much to my surprise, the nurse called. She had our MRI results. And it is official....the MRI WAS NORMAL :) minus the curvy spine of course.
Huge sigh of relief to have the official news. So what's next? We have an appointment with the Ortho doctor next Wednesday to discuss treatment options. While we are breathing a sigh of relief, I ask for good vibes, prayers, whatever you can muster for another adoptive family who didn't get the same good news we did and may be looking at spinal surgery for their sweet little one.
We also had what will likely be our last physical therapy session this morning at the medical clinic. The therapist was thrilled with Kiya's progress. She thinks her new shoes are really helping. She is impressed with her muscle tone development. She thinks she is still a little weaker in muscle tone than other children her age but she is making positive progress. We went through some exercises to continue working on. She also referred us to Birth to 3 if we wanted to seek their assistance.
Well, Birth to 3 is coming next Tuesday for our evaluation so we will see if she qualifies for physical therapy through them and then decide what to do from there based on what they recommend.
So there are still some questions as to what is next but at least we know what we are dealing with. Kiya is a trooper so we are encouraged that in time all will work out.
Thursday, July 15, 2010
Tuesday, July 13, 2010
Monday, July 12, 2010
Fortunate
I have started and deleted this post with various titles for a couple days. So much on my plate right now so hence the blogging absence.
Even with the unknowns floating around, I am feeling very fortunate. Here's why.
1) Last week we walked into the PICU with our daughter and were able to walk out a few hours later. This isn't lost on me. Not every mom could do that that day.
2) While we are still waiting on results and could be until Wednesday, I am fortunate to be able to be in the US and we can deal with whatever this is with the best medical care we can find.
3) I went to Minnesota this last weekend to the EKC Mehaber. Wow....great event and some really great people. I met so many of my online friends in person. The people who have stood behind me, posted on this blog or sent hugs on facebook. In person, in the flesh I got to meet so many of them and hang out and talk. It was incredible. I am very fortunate to be a part of this wonderful community. Sure we are all spread out but it is so nice to know that we are there for each other. Whether we need some words of support from those that have been there done that, which I got this weekend, or whether it be to enjoy a couple beers and just laugh and vent and laugh some more, which I got this weekend too.
I walked away from this weekend exhausted and refreshed. I know that sounds weird but true. It was like I had this "they do exist" moment. People I have called my friends but yet I didn't know them and then here we were in the same place, enjoying the same fun and laughing at "tails" and "mushrooms". For those that aren't in this wacky adoption community, this may all seem weird but for those of us that have used online tools like forums and blogs and facebook to maintain our sanity it was just nice to all be in the same physical place and be reassured that yup I do belong and yup you all are real and yup you are just as awesome in person as you are online.
And talk about some cute kids too....definitely a favorite moment which I will post pictures of when I figure out how to get them off my phone that is, is watching Kiya and Miss T share pretzels. And I am talking bite for bite, Kiya would take a bite and then Miss T. They would grab ones and hand them to each other and then take them away. They were in their own little world sitting on the ground while T's mom and I chatted. It was adorable.
So I guess I am saying that life has thrown a few lemons at us lately, but I am feeling fortunate. I wouldn't be able to tackle any of this without this amazing community and I feel so much more connected now that I have met people face to face.
Even with the unknowns floating around, I am feeling very fortunate. Here's why.
1) Last week we walked into the PICU with our daughter and were able to walk out a few hours later. This isn't lost on me. Not every mom could do that that day.
2) While we are still waiting on results and could be until Wednesday, I am fortunate to be able to be in the US and we can deal with whatever this is with the best medical care we can find.
3) I went to Minnesota this last weekend to the EKC Mehaber. Wow....great event and some really great people. I met so many of my online friends in person. The people who have stood behind me, posted on this blog or sent hugs on facebook. In person, in the flesh I got to meet so many of them and hang out and talk. It was incredible. I am very fortunate to be a part of this wonderful community. Sure we are all spread out but it is so nice to know that we are there for each other. Whether we need some words of support from those that have been there done that, which I got this weekend, or whether it be to enjoy a couple beers and just laugh and vent and laugh some more, which I got this weekend too.
I walked away from this weekend exhausted and refreshed. I know that sounds weird but true. It was like I had this "they do exist" moment. People I have called my friends but yet I didn't know them and then here we were in the same place, enjoying the same fun and laughing at "tails" and "mushrooms". For those that aren't in this wacky adoption community, this may all seem weird but for those of us that have used online tools like forums and blogs and facebook to maintain our sanity it was just nice to all be in the same physical place and be reassured that yup I do belong and yup you all are real and yup you are just as awesome in person as you are online.
And talk about some cute kids too....definitely a favorite moment which I will post pictures of when I figure out how to get them off my phone that is, is watching Kiya and Miss T share pretzels. And I am talking bite for bite, Kiya would take a bite and then Miss T. They would grab ones and hand them to each other and then take them away. They were in their own little world sitting on the ground while T's mom and I chatted. It was adorable.
So I guess I am saying that life has thrown a few lemons at us lately, but I am feeling fortunate. I wouldn't be able to tackle any of this without this amazing community and I feel so much more connected now that I have met people face to face.
Wednesday, July 7, 2010
Tuesday, July 6, 2010
MRI update
Today was MRI day. We got up early and headed out of the house at 7:30am to get to the hospital on time.
We were admitted and escorted up to the Pediatric ICU. Kiya was at this point a little quiet and still a little tired since we had to wake her up. After about 30 minutes of waiting, Kiya was Kiya. She was playing peek a boo with her blanket and being silly. Then they put the pulse ox monitor on her big toe....yeah she wasn't a fan and kept trying to pull it off. She got over it and went back to being silly.
We had a great nurse and a great doctor. Kiya wasn't afraid of either of them. She was so brave. She was a real charmer. She had the whole PICU coming in to see her and say hi and catch a glimpse of that smile.
The worst part hands down was the IV. We left the room but they wrapped her up like a burrito and put the IV in her foot. She hated being held down and boy did she let everyone know it. She was a trooper and recovered fairly quickly. We came back in the room to cheer her up.
So now we had to wait for the actual MRI. We were told there was a delay as they were waiting on another patient. They gave us a wagon so we could pull Kiya around the hallways as she couldn't stand up and walk with the IV in her foot. We stopped in the playroom but didn't last long as she wanted to stand up. We took more laps around the Peds wing than I can remember waiting for the go ahead.
We got the go ahead a little after 10am. The nurse took Kiya and laid her down on the gurney and Kiya got upset so the nurse carried her and the doctor pushed the gurney. They were so good with her. She calmed down right away and they even let her keep her blanket and bunny with her all the way up until it was time for the scan and even then the nurse set her bunny at the end of the bed so it was watching her. Too sweet.
We were initially told that it was going to be like 2 hours so Dave and I headed to the cafeteria to get some food and some coffee. After a little over an hour, while finishing up our snack, the PICU doctor found us and told us that they were all done. We quick hurried out of there and back up stairs so we could be with her when she woke up.
She was still pretty out of it when we got up there but within 2o minutes or so she was sitting on my lap. Then a few minutes later she was back in the wagon ready for some juice and crackers. Boy did she like that apple juice....a little too much after the diaper I had to change a couple hours later :( The whole time she was eating her snack she was again charming the whole staff. Her nurse was just so impressed with Kiya and how smart and silly and brave she was. She even commented that we should keep raising kids cause we are obviously doing it well :)
Overall, Kiya did great and we are so proud of her. We are still waiting for results but the nurse told us that the radiologist who did the scan saw just a curvy spine and nothing else. Now this isn't official but it is preliminary good news. The nurse also told me I should call and check about results on Friday if I haven't heard anything. I sure hope we get some good news before going away this weekend but I was originally told a week so we shall see.
Thanks to all our online friends out there for the prayers, good vibes and private messages. It helped keep me sane for sure. You all are amazing and I am so looking forward to meeting some of you this weekend.
We were admitted and escorted up to the Pediatric ICU. Kiya was at this point a little quiet and still a little tired since we had to wake her up. After about 30 minutes of waiting, Kiya was Kiya. She was playing peek a boo with her blanket and being silly. Then they put the pulse ox monitor on her big toe....yeah she wasn't a fan and kept trying to pull it off. She got over it and went back to being silly.
We had a great nurse and a great doctor. Kiya wasn't afraid of either of them. She was so brave. She was a real charmer. She had the whole PICU coming in to see her and say hi and catch a glimpse of that smile.
The worst part hands down was the IV. We left the room but they wrapped her up like a burrito and put the IV in her foot. She hated being held down and boy did she let everyone know it. She was a trooper and recovered fairly quickly. We came back in the room to cheer her up.
So now we had to wait for the actual MRI. We were told there was a delay as they were waiting on another patient. They gave us a wagon so we could pull Kiya around the hallways as she couldn't stand up and walk with the IV in her foot. We stopped in the playroom but didn't last long as she wanted to stand up. We took more laps around the Peds wing than I can remember waiting for the go ahead.
We got the go ahead a little after 10am. The nurse took Kiya and laid her down on the gurney and Kiya got upset so the nurse carried her and the doctor pushed the gurney. They were so good with her. She calmed down right away and they even let her keep her blanket and bunny with her all the way up until it was time for the scan and even then the nurse set her bunny at the end of the bed so it was watching her. Too sweet.
We were initially told that it was going to be like 2 hours so Dave and I headed to the cafeteria to get some food and some coffee. After a little over an hour, while finishing up our snack, the PICU doctor found us and told us that they were all done. We quick hurried out of there and back up stairs so we could be with her when she woke up.
She was still pretty out of it when we got up there but within 2o minutes or so she was sitting on my lap. Then a few minutes later she was back in the wagon ready for some juice and crackers. Boy did she like that apple juice....a little too much after the diaper I had to change a couple hours later :( The whole time she was eating her snack she was again charming the whole staff. Her nurse was just so impressed with Kiya and how smart and silly and brave she was. She even commented that we should keep raising kids cause we are obviously doing it well :)
Overall, Kiya did great and we are so proud of her. We are still waiting for results but the nurse told us that the radiologist who did the scan saw just a curvy spine and nothing else. Now this isn't official but it is preliminary good news. The nurse also told me I should call and check about results on Friday if I haven't heard anything. I sure hope we get some good news before going away this weekend but I was originally told a week so we shall see.
Thanks to all our online friends out there for the prayers, good vibes and private messages. It helped keep me sane for sure. You all are amazing and I am so looking forward to meeting some of you this weekend.
Thursday, July 1, 2010
Shoes, Carseats and MRI's--oh my
I will start with the easy stuff.
Shoes:
We took Kiya to have her feet measured today. Since she tends to roll inwards on her ankles we wanted to get her some better shoes. She was wearing solely stride rite shoes but we wanted a more higher top shoe. Turns out that Miss Kiya has been wearing shoes that are too small. She went into the store wearing 4 1/2's and she left with one pair of size 5 1/2 sandals and a high top walker that is size 6. We had no clue that she had out grown her shoes. They appeared to still fit but so didn't. So these shoes will get us hopefully to fall and then it will be new shoes again. This new mommy learned a lot today about the world of children's shoes and feet. Anyone need girl shoes size 4 and 5? I have perfectly new shoes that Miss Kiya cannot wear. Let me know.
Carseats:
On a recent dinner outing with the in-laws we were putting Kiya in their carseat and low and behold my tall little one is too tall to sit rear facing in their carseat. She needs to be moved up to the top level for the shoulder straps which per the manufacturer means she has to go forward. So this weekend all carseats will be turned around. A whole new car ride is in the future for Kiya. We had hoped to wait until she was two but we figure once one of her three carseats needs to go forward we might as well turn the others around too. I know it is safer to keep her rear facing but we have reached the point where that just isn't possible anymore.
Ok, here is the tough part of this post.
MRI
Kiya met with the Peds Ortho doctor yesterday. Not surprisingly she has scoliosis which by definition is a curvature of the spine. Currently her curve is in the moderate range at 36%. That said the doctor cannot and would not say that is all that is going on unless we get at MRI of Kiya's entire spine. The purpose is to rule out spinal cysts and a variety of other horribly scary sounding things that I can't remember the name of.
Kiya will have her MRI next Tuesday under sedation. She needs to report to the hospital at 8:15am and her actual scan will begin at 9:45. We were told it would take 2-2.5 hours to complete the scan. Then Kiya will need to eat and drink something before she will be released. We likely won't be home until close to 1pm.
Needless to say this Mama is secretly freaking out. I am doing much better today but yesterday was rough. My worst case scenario going into the appointment was a back brace and possible leg cast for her ankle/foot issues. Never in my wildest dreams did I think we would be headed to the hospital for an MRI to rule out stuff. It was a tough moment. I hate the idea of Kiya being sedated. I am holding on to hope that there is an 80% chance that the MRI will come back negative. We won't know the results for up to a week after the scan. That is going to be a LONG week.
No matter what we will get through. Kiya is a fighter and we will deal with whatever the MRI shows. In the meantime we are going to enjoy our sassy little girl and her new shoes and hopefully some cool fireworks this weekend.
If you are the praying type we would appreciate prayers for a negative MRI. If not we will take fingers crossed, good vibes, positive mojo, anything really. This parenting stuff is tough on a regular basis but when you hit these speed bumps it gets a little tougher.
Shoes:
We took Kiya to have her feet measured today. Since she tends to roll inwards on her ankles we wanted to get her some better shoes. She was wearing solely stride rite shoes but we wanted a more higher top shoe. Turns out that Miss Kiya has been wearing shoes that are too small. She went into the store wearing 4 1/2's and she left with one pair of size 5 1/2 sandals and a high top walker that is size 6. We had no clue that she had out grown her shoes. They appeared to still fit but so didn't. So these shoes will get us hopefully to fall and then it will be new shoes again. This new mommy learned a lot today about the world of children's shoes and feet. Anyone need girl shoes size 4 and 5? I have perfectly new shoes that Miss Kiya cannot wear. Let me know.
Carseats:
On a recent dinner outing with the in-laws we were putting Kiya in their carseat and low and behold my tall little one is too tall to sit rear facing in their carseat. She needs to be moved up to the top level for the shoulder straps which per the manufacturer means she has to go forward. So this weekend all carseats will be turned around. A whole new car ride is in the future for Kiya. We had hoped to wait until she was two but we figure once one of her three carseats needs to go forward we might as well turn the others around too. I know it is safer to keep her rear facing but we have reached the point where that just isn't possible anymore.
Ok, here is the tough part of this post.
MRI
Kiya met with the Peds Ortho doctor yesterday. Not surprisingly she has scoliosis which by definition is a curvature of the spine. Currently her curve is in the moderate range at 36%. That said the doctor cannot and would not say that is all that is going on unless we get at MRI of Kiya's entire spine. The purpose is to rule out spinal cysts and a variety of other horribly scary sounding things that I can't remember the name of.
Kiya will have her MRI next Tuesday under sedation. She needs to report to the hospital at 8:15am and her actual scan will begin at 9:45. We were told it would take 2-2.5 hours to complete the scan. Then Kiya will need to eat and drink something before she will be released. We likely won't be home until close to 1pm.
Needless to say this Mama is secretly freaking out. I am doing much better today but yesterday was rough. My worst case scenario going into the appointment was a back brace and possible leg cast for her ankle/foot issues. Never in my wildest dreams did I think we would be headed to the hospital for an MRI to rule out stuff. It was a tough moment. I hate the idea of Kiya being sedated. I am holding on to hope that there is an 80% chance that the MRI will come back negative. We won't know the results for up to a week after the scan. That is going to be a LONG week.
No matter what we will get through. Kiya is a fighter and we will deal with whatever the MRI shows. In the meantime we are going to enjoy our sassy little girl and her new shoes and hopefully some cool fireworks this weekend.
If you are the praying type we would appreciate prayers for a negative MRI. If not we will take fingers crossed, good vibes, positive mojo, anything really. This parenting stuff is tough on a regular basis but when you hit these speed bumps it gets a little tougher.
Wednesday, June 30, 2010
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