We went to Jackson today for 2 different visits. We left @ 6:30 am and returned @ 4:30 pm. The genetic doctor is running some more tests and the results should be back in about 3 weeks. Keeping our fingers crossed this is the end of all the testing and we get a diagnosis.
Then it was off to our 10:30 appointment with the cardiologist at Blair E. Batson Children's Hospital. She will have her heart cath. February 10, 2011 to close the hole in her heart. Hopefully she will gain weight by then.
This has been a long journey that is hopefully coming to a close soon.
Wednesday, September 8, 2010
Labor Day Weekend
This weekend we went camping at Paul B., and we had a good time. Pacey of course was the boat captain. Talynn actually rode the inner tube once, but loves the boat. We stayed busy the whole 3 days, and also had some visitors.
The excitement of the trip was Pacey's 2nd degree burn on his knee. He was sitting by the fire and got his leg caught in the chair when getting up and fell on the hot coals. We doctored it up and cleaned it as best as we could with a first aid kit. When we got home I cleaned it up really good and put SSD (burn cream) on it, but still took him to the dr just to be safe. It is healing nicely and is looking good.
The excitement of the trip was Pacey's 2nd degree burn on his knee. He was sitting by the fire and got his leg caught in the chair when getting up and fell on the hot coals. We doctored it up and cleaned it as best as we could with a first aid kit. When we got home I cleaned it up really good and put SSD (burn cream) on it, but still took him to the dr just to be safe. It is healing nicely and is looking good.
Tuesday, August 31, 2010
Little Girls Beware!!!!
Yesterday Pacey and I were sitting at the table practicing his letters for school when he looks at me with a serious look and this was the conversation:
P: Mom I have to tell you something
Me: (Not knowing what to expect) What is it?
P: Today on the playground this little girl kept chasing me and wouldn't stop.
Me: Why was she chasing you?
P: I don't know but she wouldn't stop. And then she kissed me FOR REAL! (Now embarrassed) She was chasing all the boys I was playing with trying to kiss them.
Me: Pacey you don't let little girls kiss on you it will get you sick.
Pacey: I don't know her name, and mom she can't even speak English!
So I tried explaining to him he can get sick from kissing on little girls and not let them do it anymore. What are we teaching little girls? At 5 they arrre now chasing little boys and kissing them.
P: Mom I have to tell you something
Me: (Not knowing what to expect) What is it?
P: Today on the playground this little girl kept chasing me and wouldn't stop.
Me: Why was she chasing you?
P: I don't know but she wouldn't stop. And then she kissed me FOR REAL! (Now embarrassed) She was chasing all the boys I was playing with trying to kiss them.
Me: Pacey you don't let little girls kiss on you it will get you sick.
Pacey: I don't know her name, and mom she can't even speak English!
So I tried explaining to him he can get sick from kissing on little girls and not let them do it anymore. What are we teaching little girls? At 5 they arrre now chasing little boys and kissing them.
Monday, August 23, 2010
My Weekend
It started with Cobb going to the doctor Friday to find out he had strep throat, and was contagious for a few days. Meaning I had 2 birthday parties Saturday, presents to go buy, and groceries, plus all the normal things to deal with alone. We made it through to Sunday night and the septic tank messes up. How wonderful! Now we have to be careful until the new one can be installed this weekend. So all the grass I have worked so hard on to get growing in the last 2 years will mostly be dug up. I can't wait! It sometimes seems just when you think everything will be okay for a few days something else happens. Oh and Keagan has had a cold for over a week and we are heading to the doctor in the morning. Hope everyone has had a great Monday!
Monday, August 16, 2010
Keagan
Keagan and her twin brother Brayden were born 4 weeks early, and he was in the NICU for 2 weeks before we brought home. They sent us to the Rehabilitation Department at Wesley Medical Center for his NICU check up to make sure he was on schedule for his age and adjusted age, and they decided to look at Keagan to make sure she was also. Well he was fine, but she was developmentally delayed. They set up an appointment with the Early Intervention Program (which is WONDERFUL by the way). We have a service coordinator that come once a week and a physical therapist that also comes once a week. Without this I would have found a way to help my child, but they have been a true blessing.
As a mother you just know when things are not right with your child, and it started early with her. The first 2 weeks we were at the doctor at least everyday because she would not eat or gain weight. After a few months I told the doctor something was not right, and I guess he thought what everyone else thought, just because she was small I was being over protective. The light bulb finally went off and he decided to do something.
We have been to a neurologist, geneticist, and cardiologist. She is now 15 months old and we still have no answers. EKG, EEG, Echo cardiogram (4), chromosome testing (all normal), and a variety of genetic tests. She was tested for maroteaux-lamy syndrome which came back above average , but in a normal range. I still don't understand how that happens.
She has had episodes where she has turned pale, no color whatsoever, and goes limp. They couldn't figure out why. And now her hands, feet, mouth, and nose turn white to blue to purple then back again. Still no explanation for that except it could possibly be Raynauds Disease.
She has a heart murmur (PFO now an ASD). Three echo cardiograms have been done to keep a check on it and we were referred to a Pediatric Cardiologist. The appointment was this past Friday. Up until then everyone has said her heart was fine and they would just watch it to make sure it hasn't changed any, and she could live a normal life with it. The doctor we seen said something completely different than that. He told us that her murmur did not sound like a small thing and decided to do another echo. He measured her murmur and said it was bigger than any of the reports had said, he found the right side was bigger, and that she had fluid. He is in the process of making us an appointment with a surgeon, because he says it needs to be fixed with an umbrella. Not something I wanted to hear, but I can accept it if it needs to be done.
The thing I don't understand why none of the past echos have not brought up any of these issues. It is just frustrating that it took this long for these issues to be addressed by someone, especially when she has had three previous echos and they all said it was a normal heart.
The only person who is a true advocate for your child is their parent because if we don't speak up for them no one will.
Sorry for going everywhere with this post and venting a little, but I just wrote it as it came.
As a mother you just know when things are not right with your child, and it started early with her. The first 2 weeks we were at the doctor at least everyday because she would not eat or gain weight. After a few months I told the doctor something was not right, and I guess he thought what everyone else thought, just because she was small I was being over protective. The light bulb finally went off and he decided to do something.
We have been to a neurologist, geneticist, and cardiologist. She is now 15 months old and we still have no answers. EKG, EEG, Echo cardiogram (4), chromosome testing (all normal), and a variety of genetic tests. She was tested for maroteaux-lamy syndrome which came back above average , but in a normal range. I still don't understand how that happens.
She has had episodes where she has turned pale, no color whatsoever, and goes limp. They couldn't figure out why. And now her hands, feet, mouth, and nose turn white to blue to purple then back again. Still no explanation for that except it could possibly be Raynauds Disease.
She has a heart murmur (PFO now an ASD). Three echo cardiograms have been done to keep a check on it and we were referred to a Pediatric Cardiologist. The appointment was this past Friday. Up until then everyone has said her heart was fine and they would just watch it to make sure it hasn't changed any, and she could live a normal life with it. The doctor we seen said something completely different than that. He told us that her murmur did not sound like a small thing and decided to do another echo. He measured her murmur and said it was bigger than any of the reports had said, he found the right side was bigger, and that she had fluid. He is in the process of making us an appointment with a surgeon, because he says it needs to be fixed with an umbrella. Not something I wanted to hear, but I can accept it if it needs to be done.
The thing I don't understand why none of the past echos have not brought up any of these issues. It is just frustrating that it took this long for these issues to be addressed by someone, especially when she has had three previous echos and they all said it was a normal heart.
The only person who is a true advocate for your child is their parent because if we don't speak up for them no one will.
Sorry for going everywhere with this post and venting a little, but I just wrote it as it came.
Saturday, August 14, 2010
First Week of School
I know I haven't blogged in a few days so I will update you on the week.
Pacey made it through his first week of school without getting in trouble, and that is awesome. I am waiting for him to bring a note home saying he talks too much or too loud. YAY for green all week long.
His favorite thing about school he says is riding the school bus. I have not figured out how a child could enjoy the school bus that much, especially Tuesday (his first experience) I asked him how he liked it and he replies, "It was 4000 degrees on that bus." "So are you ready for me to pick you up tomorrow," I asked. "No I have 5 friends on there and I am going to ride it everyday." That was always the last thing I wanted to do when I was in school was ride the nasty, stinking, smelly, hot bus. Yes I was spoiled and was dropped off and picked up everyday.
Well for him the afternoon ride was not enough he wants to ride in the mornings also. At drop off Thursday I told the bus driver he wanted to ride in the morning, and she said she would come pick him up on Friday. He was soo excited and wanting to go stand outside at 6:30 a.m., the bus doesn't run until 6:55 a.m. or so. He got into watching cartoons and I was looking out for the bus to come down the road, and told Pacey she was coming. He ran out the door to the driveway and she passed right on by, the look on his face was priceless. And yes she turned around to pick him up.
Breakfast at school was also discovered. I don't remember lunch and breakfast being so expensive when I was in school. Lunch is $2.50 and breakfast is $1.75.
I just hope continues to enjoy school like this for a while.
Pacey made it through his first week of school without getting in trouble, and that is awesome. I am waiting for him to bring a note home saying he talks too much or too loud. YAY for green all week long.
His favorite thing about school he says is riding the school bus. I have not figured out how a child could enjoy the school bus that much, especially Tuesday (his first experience) I asked him how he liked it and he replies, "It was 4000 degrees on that bus." "So are you ready for me to pick you up tomorrow," I asked. "No I have 5 friends on there and I am going to ride it everyday." That was always the last thing I wanted to do when I was in school was ride the nasty, stinking, smelly, hot bus. Yes I was spoiled and was dropped off and picked up everyday.
Well for him the afternoon ride was not enough he wants to ride in the mornings also. At drop off Thursday I told the bus driver he wanted to ride in the morning, and she said she would come pick him up on Friday. He was soo excited and wanting to go stand outside at 6:30 a.m., the bus doesn't run until 6:55 a.m. or so. He got into watching cartoons and I was looking out for the bus to come down the road, and told Pacey she was coming. He ran out the door to the driveway and she passed right on by, the look on his face was priceless. And yes she turned around to pick him up.
Breakfast at school was also discovered. I don't remember lunch and breakfast being so expensive when I was in school. Lunch is $2.50 and breakfast is $1.75.
I just hope continues to enjoy school like this for a while.
Monday, August 9, 2010
First Day of Big School
My little man Pacey started his first day of Kindergarten this morning. He was all excited. Last night we packed his lunch box, fixed his snack, and made blueberry muffins for breakfast.
When he woke up this morning he got all dressed and ready to go, and the whole time I had my camera taking pictures. (will post them later) We leave to take Talynn to pre-school since I was taking Pacey, and poor thing cried when she realized he was not staying with her (I want my my my Pacey). He got a little nervous at that point, but away we went.
We pull up to the school and I could have just started crying right then, but I held it back. He was so sweet and held my hand the whole way to his room asking if I was going to cry. When we arrived at his room we found his name and he sat down and I told him I was leaving. Again asking me if I was going to cry (which I almost did) I could tell he was a little nervous, so I didn't, he gave me 5 kisses and 3 hugs and I left. Yes I just left my baby sitting there all dressed up at his table in a classroom at big school. And no I didn't cry when I got to the car either.
The whole day I wondered what he was doing and if he was having fun. Then came time to pick him up and he hardly says anything about his day. Except, "We only took a nap for like 10 minutes and at Ms V's we took a nap for 100 minutes" Oh and there was "I don't want to be a car rider mom, I just want ot be a bus rider." I don't even get to take in the fact he is in Kindergarten much less let him on a school bus. So tomorrow he is going to be riding the school bus home. Only because we know the driver and he will not be on it that long before being dropped off.
After getting his snack ready for tomorrow I had the pleasure of filling out the packet of papers he brought home again. They have already sent home a letter about yearbooks, how crazy is that?
Well we shall see how it goes tomorrow, the first day seemed pretty good.
When he woke up this morning he got all dressed and ready to go, and the whole time I had my camera taking pictures. (will post them later) We leave to take Talynn to pre-school since I was taking Pacey, and poor thing cried when she realized he was not staying with her (I want my my my Pacey). He got a little nervous at that point, but away we went.
We pull up to the school and I could have just started crying right then, but I held it back. He was so sweet and held my hand the whole way to his room asking if I was going to cry. When we arrived at his room we found his name and he sat down and I told him I was leaving. Again asking me if I was going to cry (which I almost did) I could tell he was a little nervous, so I didn't, he gave me 5 kisses and 3 hugs and I left. Yes I just left my baby sitting there all dressed up at his table in a classroom at big school. And no I didn't cry when I got to the car either.
The whole day I wondered what he was doing and if he was having fun. Then came time to pick him up and he hardly says anything about his day. Except, "We only took a nap for like 10 minutes and at Ms V's we took a nap for 100 minutes" Oh and there was "I don't want to be a car rider mom, I just want ot be a bus rider." I don't even get to take in the fact he is in Kindergarten much less let him on a school bus. So tomorrow he is going to be riding the school bus home. Only because we know the driver and he will not be on it that long before being dropped off.
After getting his snack ready for tomorrow I had the pleasure of filling out the packet of papers he brought home again. They have already sent home a letter about yearbooks, how crazy is that?
Well we shall see how it goes tomorrow, the first day seemed pretty good.
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