We are home!
Actually we've been home since the day after surgery- although I wasn't and am not necessarily happy about that.
Recovery is going well. Kasey seems to think she's completely healed but her back does NOT agree. However, we have started letting her sit up to eat lunch and dinner AND we've finally figured out how to hold her which makes both Kasey and I super happy because we can have snuggle time now!
I am constantly checking her incision terrified of a stitch popping or fluid leaking. I'm wondering when I will eventually stop worrying about either of those things happening because I am definitely an over-worrier.
On another topic- this month is Spina Bifida Awareness Month and Kasey is being featured on another blog! Please go check this blog out and read about other children and adults with Spina Bifida!
Meet Kasey
10/15/11
10/3/11
Update
I know- not a very creative title but I'm lacking sleep these days!
First of all, Kasey is proud to announce her new baby sister Kora is here! She was born September 8th at 7:15 p.m. via c-section.
She's already almost a month old! Its hard for me to believe how quickly time has flown by!
Kasey is doing okay. We recently had to have an MRI done because of some changes that were going on with her bowels, bladder and legs. Last Monday we took the MRI disc to her neurosurgeon at Vanderbilt to have him look at it. She has tethered cord and will be having the surgery to release the tethered cord this week! Trust me- I'm shocked that its happening so quickly!! Wednesday we will head that way and get a hotel or get into the Ronald McDonald House and then Thursday morning she has to be at the hospital at 6 in the morning and her surgery will be at 8. Surgery will last about 3 hours and she will be in the hospital 3 days or so. Recovery will take 6 weeks. She might be feeling better before then and may be allowed to get around but full recovery will take 6 weeks.
Please keep us in your prayers because we are extremely nervous about this. Yes, this is her 3rd surgery and at least she's 3 ... so she hasn't had any surgery since she was a newborn but still.. its surgery. They will be cutting into my baby girl! Although.. to be honest she doesn't look like my little toddler anymore!
First of all, Kasey is proud to announce her new baby sister Kora is here! She was born September 8th at 7:15 p.m. via c-section.
Kasey is doing okay. We recently had to have an MRI done because of some changes that were going on with her bowels, bladder and legs. Last Monday we took the MRI disc to her neurosurgeon at Vanderbilt to have him look at it. She has tethered cord and will be having the surgery to release the tethered cord this week! Trust me- I'm shocked that its happening so quickly!! Wednesday we will head that way and get a hotel or get into the Ronald McDonald House and then Thursday morning she has to be at the hospital at 6 in the morning and her surgery will be at 8. Surgery will last about 3 hours and she will be in the hospital 3 days or so. Recovery will take 6 weeks. She might be feeling better before then and may be allowed to get around but full recovery will take 6 weeks.
Please keep us in your prayers because we are extremely nervous about this. Yes, this is her 3rd surgery and at least she's 3 ... so she hasn't had any surgery since she was a newborn but still.. its surgery. They will be cutting into my baby girl! Although.. to be honest she doesn't look like my little toddler anymore!
She definitely is looking like a big preschooler these days now that she's 3!
I want to also remind everyone that this month is Spina Bifida Awareness month! I will try to start posting more and sharing facts and such!
7/12/11
Changes
First of all, I'm making some changes to the blog. I am trying to find what really reflects whats on my heart. It may take awhile to make it just the way I like it so if you see lots of changes do not be confused. I cannot seem to make up my mind these days.
So much has been going on in our lives lately. I believe we have had one week lately where we did not have any appointments to go to! It was amazing and a little boring.
We found out that according to the power that be (the people in the school we were hoping Kasey would go to) that Kasey does not qualify as a handicapped student. I cried my tears, was a little angry because she should qualify based on her diagnosis and then moved on to making new plans. Honestly, from the time she was born I was always told that when she turned three she would qualify for a three year old program in the school system based on her diagnosis. So the fact that for some reason this school believe she does not qualify shocked me.
We are waiting to see if she can attend Head Start. In the future when she reaches kindergarden age, we will homeschool her. However, I would like her to get some experience and time in around other children. To be honest, Kasey is not always good at handling other children coming up and getting in her space by touching her wheelchair. She is at the age where she believes that its appropriate to just push them away from her.
We have been reorganizing the furniture around our house to make room for any baby stuff that finds its way into the house in the next 11 weeks. Wow- only 11 more weeks until Ms. Kora makes her way into this world. Kasey is excited for the most part. She has her moments where I think she realizes that soon she will not be the only princess in the house. I believe the first time she realized this was when someone gave me a bunch of little girls clothes and I had to keep telling her," Honey, that is not going to fit you. That is for baby Kora!" Yeah... that did NOT go over well!
Sometimes I wonder at our sanity. When I think of the future and all the things we are going to deal with medically with Kasey, I wonder how we are going to handle all of that and another child. Plus, we want several children. I know that right now I am wondering how emotionally I am going to handle this entrance of another child into our lives. The truth is that it is scary. When I was pregnant with Kasey, I may have been eighteen years old and a single mom-to-be but I still thought that everything would always turn out okay. Then at 32 weeks of pregnancy my world crashed in around me. I had all these plans for the future that have no had to be changed, altered or adjusted to fit what Kasey can or cannot do.
We have been told this baby is healthy but I was told that for 32 weeks of my pregnancy with Kasey. I still worry that something is going to happen. I worry of how I am going to deal with my emotions whenever Ms. Kora does things developmentally that Kasey cannot and may not ever do. I worry that Kasey will be upset and jealous. I worry that somehow I will fail one of my girls somehow. I know I need to just have faith that things will work out and that God will help us but sometimes such things are easier said than done.
Well enough emotional jibber jabber for the night! The hubby is sick, Kasey is sick, and I am exhausted but thankfully NOT sick!
So much has been going on in our lives lately. I believe we have had one week lately where we did not have any appointments to go to! It was amazing and a little boring.
We found out that according to the power that be (the people in the school we were hoping Kasey would go to) that Kasey does not qualify as a handicapped student. I cried my tears, was a little angry because she should qualify based on her diagnosis and then moved on to making new plans. Honestly, from the time she was born I was always told that when she turned three she would qualify for a three year old program in the school system based on her diagnosis. So the fact that for some reason this school believe she does not qualify shocked me.
We are waiting to see if she can attend Head Start. In the future when she reaches kindergarden age, we will homeschool her. However, I would like her to get some experience and time in around other children. To be honest, Kasey is not always good at handling other children coming up and getting in her space by touching her wheelchair. She is at the age where she believes that its appropriate to just push them away from her.
We have been reorganizing the furniture around our house to make room for any baby stuff that finds its way into the house in the next 11 weeks. Wow- only 11 more weeks until Ms. Kora makes her way into this world. Kasey is excited for the most part. She has her moments where I think she realizes that soon she will not be the only princess in the house. I believe the first time she realized this was when someone gave me a bunch of little girls clothes and I had to keep telling her," Honey, that is not going to fit you. That is for baby Kora!" Yeah... that did NOT go over well!
Sometimes I wonder at our sanity. When I think of the future and all the things we are going to deal with medically with Kasey, I wonder how we are going to handle all of that and another child. Plus, we want several children. I know that right now I am wondering how emotionally I am going to handle this entrance of another child into our lives. The truth is that it is scary. When I was pregnant with Kasey, I may have been eighteen years old and a single mom-to-be but I still thought that everything would always turn out okay. Then at 32 weeks of pregnancy my world crashed in around me. I had all these plans for the future that have no had to be changed, altered or adjusted to fit what Kasey can or cannot do.
We have been told this baby is healthy but I was told that for 32 weeks of my pregnancy with Kasey. I still worry that something is going to happen. I worry of how I am going to deal with my emotions whenever Ms. Kora does things developmentally that Kasey cannot and may not ever do. I worry that Kasey will be upset and jealous. I worry that somehow I will fail one of my girls somehow. I know I need to just have faith that things will work out and that God will help us but sometimes such things are easier said than done.
Well enough emotional jibber jabber for the night! The hubby is sick, Kasey is sick, and I am exhausted but thankfully NOT sick!
5/20/11
School Evaluations and 3 year old Attitude
Yesterday was Kaseys first set of school evaluations. It was interesting to say the least. She alternated between cooperating and being stubborn. When she did not want to do something she would start saying "No! No! I can't" and getting extremely emotional. However, when she did cooperate she did amazingly well. Well enough that it worries me that she may not qualify for this school program as it is for children with delays. This set of evaluations was for speech & language skills and to see where she was at mentally. She was tested by a speech therapist, a general educator and the school psychologist.
Of course, as usual, I left feeling as if there's stuff I've been lacking at teaching her. There was stuff I never thought to work with her on. For instance, the psychologist would lay some stuff out and tell Kasey to look but not to touch and to have quiet hands. I never thought that I should be teaching Kasey that kind of stuff. They reassured me though that the curriculum they tested her on is for children 30 months-10 years old. So for her being 33 months - she got pretty far into the testing before she had problems. I believe that her biggest problems will lay with her testing when it comes to physical and occupational therapy so we'll see how that goes on June 1st.
Recently, Kasey has also started showing some of the signs of a three year old attitude. We are exhausted over here! She cries over everything. I think its even confusing her! The first day the attitude started was last Sunday. She was at church and I went to get her from her classroom and she was bawling her eyes out. When we asked her what was wrong she just kept saying she didn't know. Two was easy- this is horrible! Hopefully though- it does not last this whole next year that she's 3! Maybe she'll even get over this early 3 year old attitude before she turns 3 in August. I can hope right?
Of course, as usual, I left feeling as if there's stuff I've been lacking at teaching her. There was stuff I never thought to work with her on. For instance, the psychologist would lay some stuff out and tell Kasey to look but not to touch and to have quiet hands. I never thought that I should be teaching Kasey that kind of stuff. They reassured me though that the curriculum they tested her on is for children 30 months-10 years old. So for her being 33 months - she got pretty far into the testing before she had problems. I believe that her biggest problems will lay with her testing when it comes to physical and occupational therapy so we'll see how that goes on June 1st.
Recently, Kasey has also started showing some of the signs of a three year old attitude. We are exhausted over here! She cries over everything. I think its even confusing her! The first day the attitude started was last Sunday. She was at church and I went to get her from her classroom and she was bawling her eyes out. When we asked her what was wrong she just kept saying she didn't know. Two was easy- this is horrible! Hopefully though- it does not last this whole next year that she's 3! Maybe she'll even get over this early 3 year old attitude before she turns 3 in August. I can hope right?
5/1/11
We need Prayers
This last week has been insane. We weren't supposed to be heading to Florida until the 13th of May. We're already here though- we got a call last Sunday on Easter from my mother in law letting us know that my husbands step-dad (who was like a dad to him) had a seizure. We asked if we needed to head down to Florida and my mother in law said not yet.
Monday things got worse. Sunday night he had 8 grand mal seizures and they had to intubate him before my mother in law even made it to the emergency room. At first they thought that my father in law would make it but he took a turn for the worse. We headed out Monday night on the 12+ hour drive to Florida even though the doctors at that point thought he'd get better. Its good we made it down here because my father in law then took a turn for the worse. His kidneys failed and his lungs kept filling with fluid. My mother in law had to make a decision- well the whole family did. Would he want to spend the rest of his life in a nursing home on dialysis and a respirator or would he want to go home to Jesus? The answer we obvious so Thursday morning my father in law went to be with his Maker. The most interesting thing- he passed exactly 5 years since he was in a awful motorcycle wreck that had him in a coma for months. God gave my mother in law exactly 5 more years with my father in law than she was supposed to. He passed almost the exact time of morning as he had his accident.
Needless to say we're all exhausted and grieving. The viewing and the funeral service is tomorrow (Monday) and then he will be cremated. I have no idea how long we're going to be here in Florida or when we're going home. We're just going to wait and see where God leads and when we feel that we can leave my mother in law. Please pray for us as we all deal with this!
Monday things got worse. Sunday night he had 8 grand mal seizures and they had to intubate him before my mother in law even made it to the emergency room. At first they thought that my father in law would make it but he took a turn for the worse. We headed out Monday night on the 12+ hour drive to Florida even though the doctors at that point thought he'd get better. Its good we made it down here because my father in law then took a turn for the worse. His kidneys failed and his lungs kept filling with fluid. My mother in law had to make a decision- well the whole family did. Would he want to spend the rest of his life in a nursing home on dialysis and a respirator or would he want to go home to Jesus? The answer we obvious so Thursday morning my father in law went to be with his Maker. The most interesting thing- he passed exactly 5 years since he was in a awful motorcycle wreck that had him in a coma for months. God gave my mother in law exactly 5 more years with my father in law than she was supposed to. He passed almost the exact time of morning as he had his accident.
Needless to say we're all exhausted and grieving. The viewing and the funeral service is tomorrow (Monday) and then he will be cremated. I have no idea how long we're going to be here in Florida or when we're going home. We're just going to wait and see where God leads and when we feel that we can leave my mother in law. Please pray for us as we all deal with this!
4/22/11
Today was a sad day:(
Today was a sad day. We had to let Grizz go back to his former owners. He was just becoming increasingly unhappy here. He was learning well and quickly - but he wasn't happy with what he was doing and in the last few weeks it became apparent that he missed his former owners. So today he went back to live with them and was EXTREMELY happy to see them. We will miss him, and we are not giving up on having a service/therapy dog for Kasey- we are just waiting a few months to see what happens with Kaseys current health issues. She has been to the ER twice in the last 4 weeks for high fever due to severe UTI's and we are all exhausted. Please pray for us as we are all sad to have had to make this decision. We also need prayers for Kaseys health. I think one of the hard things for me is I hate feeling like I've given up. We did everything right training wise and everything we could to make him happy- he was/is just one of those one family dogs.
In brighter happier news- Kasey is proud to announce that she is going to have a little sister named Kora!
In brighter happier news- Kasey is proud to announce that she is going to have a little sister named Kora!
3/12/11
Its OFF
Kaseys cast is off! She has to wear a splint whenever she's playing and such but when she's sleeping and whenever she wants her bubble baths she doesn't have to wear it! She is so excited about being able to have bubble baths again. She took one yesterday as soon as we got home, then went to bed crying that she really wanted another one. WE might have given in if we didn't think she was fighting something off.. However, to make up for our meanness- when she woke up this morning she went straight into a bubble bath!
I'm slowly feeling better. However, we do have an appointment on Wednesday with the high risk OB. This little bean wouldn't cooperate for the screening ultrasound at my OB's office so they decided that the measurements they got weren't something we could rely on- they were afraid it would give a false positive or negative- so off we go this week to the high risk place. I'm extremely nervous. All of this means I'm going to be spending the next few days nervously wondering if something is going to show up on the ultrasound. I'm not sure how emotionally I could handle something being wrong. I'd deal with it obviously but- its scary. As much as I want several more children someday I'm just not sure I can handle the worrying every pregnancy, and wondering if we're taking something away from Kasey by having more children, or any of the other "what ifs."
I'm slowly feeling better. However, we do have an appointment on Wednesday with the high risk OB. This little bean wouldn't cooperate for the screening ultrasound at my OB's office so they decided that the measurements they got weren't something we could rely on- they were afraid it would give a false positive or negative- so off we go this week to the high risk place. I'm extremely nervous. All of this means I'm going to be spending the next few days nervously wondering if something is going to show up on the ultrasound. I'm not sure how emotionally I could handle something being wrong. I'd deal with it obviously but- its scary. As much as I want several more children someday I'm just not sure I can handle the worrying every pregnancy, and wondering if we're taking something away from Kasey by having more children, or any of the other "what ifs."
3/8/11
Nervous
Tomorrow is a big day. Tomorrow we go for all our first trimester screening for this pregnancy. I'm super nervous- I know there are plenty of people who have a child with spina bifida and then have a typical child but still... it makes me nervous. However, on the other hand we get to have another ultrasound and those always making me all happy! I'm 11 weeks now and looking forward to the second trimester when I should start feeling loads better ( I hope!)
IN other news, Kasey is getting her cast off on Friday we hope and then I'm calling her orthotics guy and having a talk with him. Her RGO's need enlarged and if thats not possible then we have to get her casted for new ones- because until she gets a bigger pair- she can't use her new wheeled stander OR work with her crutches. VERY frustrating.
One thing we are excited about for her is that in May, Kasey gets to go to Disney World! My mother in law is taking us all when we go down there for vacation and we are super excited. Me, my husband, Kasey and Mr. Grizz will be spending almost a month down in Florida so that Kasey gets a lot of grandparent time and time with her cousin, Evan. Kasey ADORES Evan and of course loves her grandparents. I think it will be good for us all to have a break from everything for awhile as well. Thankfully since Eric works from home, we can just be gone for a month without it being an issue.
Kasey has been so much more social and chatty lately. She constantly talks in full sentences and she's even learned to use SCISSORS! So far she just snips straws and at paper but for 31 months old she's doing awesome! She's been asking to go to school for some reason so I guess its good that she will start school in August! She even was playing with her toy school bus and said she wanted to ride a school bus! My little girl is growing up WAYYYY too fast and I don't like it! Its hard to believe that in 5 months she'll be 3 already. It seems like yesterday she was born and she's already so big and independent. Its going to be interesting to see how she acts with a new baby in the house. She tells us she doesn't want a baby brother- but she wants a baby sister. Some days she doesn't even want a baby sister.
Hopefully in the next few weeks I"ll be feeling better and we'll get back to seriously training Grizz. With a new baby coming in September, we need to get serious about his training so that things aren't too crazy when there is a new child in the house. He's so smart that I think training will continue to progress nicely.
IN other news, Kasey is getting her cast off on Friday we hope and then I'm calling her orthotics guy and having a talk with him. Her RGO's need enlarged and if thats not possible then we have to get her casted for new ones- because until she gets a bigger pair- she can't use her new wheeled stander OR work with her crutches. VERY frustrating.
One thing we are excited about for her is that in May, Kasey gets to go to Disney World! My mother in law is taking us all when we go down there for vacation and we are super excited. Me, my husband, Kasey and Mr. Grizz will be spending almost a month down in Florida so that Kasey gets a lot of grandparent time and time with her cousin, Evan. Kasey ADORES Evan and of course loves her grandparents. I think it will be good for us all to have a break from everything for awhile as well. Thankfully since Eric works from home, we can just be gone for a month without it being an issue.
Kasey has been so much more social and chatty lately. She constantly talks in full sentences and she's even learned to use SCISSORS! So far she just snips straws and at paper but for 31 months old she's doing awesome! She's been asking to go to school for some reason so I guess its good that she will start school in August! She even was playing with her toy school bus and said she wanted to ride a school bus! My little girl is growing up WAYYYY too fast and I don't like it! Its hard to believe that in 5 months she'll be 3 already. It seems like yesterday she was born and she's already so big and independent. Its going to be interesting to see how she acts with a new baby in the house. She tells us she doesn't want a baby brother- but she wants a baby sister. Some days she doesn't even want a baby sister.
Hopefully in the next few weeks I"ll be feeling better and we'll get back to seriously training Grizz. With a new baby coming in September, we need to get serious about his training so that things aren't too crazy when there is a new child in the house. He's so smart that I think training will continue to progress nicely.
2/18/11
Pictures and Such
First of all, I want to apologize to those of you who have been commenting. The template I was using never showed that we had comments on the blog. So I didn't realize until I decided to go back to a regular template that people had been commenting! Thanks to those of you who read and comment. Its nice to have feedback and people reading.
Second of all- I have pics of Ms. Kasey in her pink monstrosity! Thankfully they ended up just doing a regular cast from her hip to her toes.
This is what it looks like:
Second of all- I have pics of Ms. Kasey in her pink monstrosity! Thankfully they ended up just doing a regular cast from her hip to her toes.
This is what it looks like:
I need a newer pictures of it. They trimmed up around the toes so it doesn't look so messy. All you see are her toes peeking out! For those of you who wonder- the mark on her other leg is her being in her braces in hew new stander a tad too long. Because of the nerves that lead to her legs being destroyed- the lower half of her body is more susceptible to break down and bruising and scarring rather easily. So when she was in a standing position in her braces too long (even with tights on under the braces) it made that skin dry and peely and red.
I know lately I haven't shared many pictures.
Recently, Kasey got her new wheeled stander. She loves it- what sucks is that she can only be in it so long at a time- and now that her leg is in a cast... its going to be awhile before she gets in it. Especially since she's gotten a tad chubbier and her legs are too chunky for her RGO's.
This is what her stander looks like
Kasey was so excited when she saw it for the first time! As soon as she got in it, she put her hands on her wheels even though they were still trying to strap her in.
Please ignore the messiness in the next picture. We're still slowly unpacking and getting stuff up on the walls even though we moved in here in December. This is a pic of Kasey and Mr. Grizz!
Since getting her stander, Kasey has been on one public outing in it. We took her to the mall a few days before Valentines Day and treated her to her first Build a Bear experience. Despite being a girly girl- she did not want any clothing for her new friend LadyBug. She just wanted her! NO accessories or anything.
And here is a snapshot of one of the silly faces that she makes when she's being sassy!
She definitely has her own personality these days. Her new favorite words are "Sure" and "favorite." Everything is her favorite. Last night we had marriage class at church. When I went to pick her up from her classroom she came wheeling towards me squealing and loudly exclaiming about how "oh! its my favorite mama!" Then when we went to meet up with my husband who was in the main part of the church- she pushed her wheelchair as hard and fast as she could towards him and exclaimed that he was her favorite daddy! She definitely makes us happy even when the day isn't going well and makes me smile even when I'm not feeling good.
She insists that she is going to have a baby sister. She refuses to believe that it could be a little brother. She occasionally will poke at my belly and tell me there is a baby in there.. but for the most part she doesn't bring it up.
By the way, in case any of you noticed in the picture where she's getting her cast- that cute blue thing on her booty is a cloth diaper! I know this blog is supposed to focus on Kasey and Grizz but sometimes I will still probably tend to talk about this baby, family life and the cute fluffy mail I'm getting! All I've got to say is newborn cloth diapers SOOOO tiny and soooo cute!
2/15/11
Fractures..
So its official- I've decided that for now the worst part of Kaseys birth defect to me is the fact that she can break so easily. She is currently dealing with her second ever fracture. Her left femur has fractured again. She hasn't been doing anything out of the ordinary but somehow- it just fractured.
This may seem like its not that huge a deal but it is. Its going to set back any progress she was working on- by weeks or possibly months. I've been googling to find as much info as I can- and they could put her in a spica cast from 4 weeks to 3 months. She's not going to be able to sit in her wheelchair or get around or anything. She's going to truly be immobile... My heart breaks for her because I know the next few weeks are going to be rough.
Tomorrow is when we'll find out what they are going to do about casting her. They are waiting for her swelling to go down to get her in there for an appointment. So we go in at 9:45. We'll see what a local doctor says- and then I may call her doctor 3 hours away and take her there. I've e-mailed her Vanderbilt doctors to see what they advise. I'm panicing. 4 weeks even is going to delay Kasey. We're so careful to watch how she crawls to make sure her leg doesn't twist funny. We're so careful of her in general- and now she's hurt and there's not much I can do.
Its one of those times when I feel alone and I'm angry at Kaseys prognosis. What she faces ahead of her- I wouldn't wish on anyone. Yes, I know it could always be worse- but that doesn't always make it easier. And now I'm panicing over having another child with Kasey already dealing with so much...
This may seem like its not that huge a deal but it is. Its going to set back any progress she was working on- by weeks or possibly months. I've been googling to find as much info as I can- and they could put her in a spica cast from 4 weeks to 3 months. She's not going to be able to sit in her wheelchair or get around or anything. She's going to truly be immobile... My heart breaks for her because I know the next few weeks are going to be rough.
Tomorrow is when we'll find out what they are going to do about casting her. They are waiting for her swelling to go down to get her in there for an appointment. So we go in at 9:45. We'll see what a local doctor says- and then I may call her doctor 3 hours away and take her there. I've e-mailed her Vanderbilt doctors to see what they advise. I'm panicing. 4 weeks even is going to delay Kasey. We're so careful to watch how she crawls to make sure her leg doesn't twist funny. We're so careful of her in general- and now she's hurt and there's not much I can do.
Its one of those times when I feel alone and I'm angry at Kaseys prognosis. What she faces ahead of her- I wouldn't wish on anyone. Yes, I know it could always be worse- but that doesn't always make it easier. And now I'm panicing over having another child with Kasey already dealing with so much...
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