Kylie is our six year old princess. I think she's the perfect combination of a prissy tomboy. When I found out that I was pregnant with her, I was in denial. I wasn't ready for another baby. Bailey was only two. But the Lord had other plans. See, there are two stories about the conception of Kylie. The first being that I had played an April fools joke on my mother and sister. I had told them that some medicine I had taken had counter acted with my birth control and now I was pregnant. I really had them going. Well the joke was on me two weeks later. I think I took three tests to make sure. I was stunned. The other story is that Haydn was bound and determined to have a sister, so every night at bedtime he would pray for one. Actually he prayed for three things. A van, a new house and a sister. Now, I'm a true believer that God listens to little children because God answered Haydn's prayers and granted him all three.
Now Kylie is blossoming into a beautiful little girl. She can get down and dirty with her brothers but she can also very feminine and dainty. She already has a sense of fashion, and can match and coordinate any outfit. She truly has that "girl gene". She's a mommies girl unless daddy is around. Kylie's got her daddy wrapped.
Now that she's in kindergarten Kylie has been coming home saying and doing new things that she's learned from friends. The other day she was watching TV and her show was going off so it was time for Haydn to watch his show. Kylie got upset cause Hannah Montana was next and she wanted to watch it. When she saw she wasn't going to get her way, she started to stomp off to her room and on the way she yelled out "YOUR RUINING MY LIFE I'M GOING TO MY ROOM!". I told her "I'm sorry you feel that way, but while your in there clean up!" She didn't like that too much but it sure made her stop yelling.
Sunday, March 22, 2009
Monday, March 16, 2009
Bailey's confidence booster
The LORD is watching over Bailey. He has had difficulty in even the smallest thing, but on Wednesday the Lord granted some of our little prayers.
I talked with Bailey's Special Needs Coordinator and she was so excited to tell me how Bailey had done is school that day. During recess in their room the kids get out toys and games to play with. Usually Bailey just draws. Well on this particular day, he had chosen a book. Now that may sound like it's nothing but for Bailey it's big. He can't focus long enough to keep his eyes on a sentence let alone a book. See, Bailey's medication had been changed and this was the first day he had started it. But this was by no means all that Bailey had in store for us that day. Later on, the class was given an assignment to write about something in the future. Baileys work is significantly altered. So his assignment would maybe be to draw it. He decided that he was going to write like the rest of the class, and without any help, he wrote five sentences ALL BY HIS SELF. No one helped or looked over his shoulder. Normally Bailey can't write ONE sentence, but to be able to form five sentences, write them down, and use some punctuation is astounding for him. Mrs.Vickie (Special Needs Coordinator) bragged and bragged about him which is very important for him. He needs some major confidence boosting.
Bailey can relate to Psalms 23 so well
1 The Lord is my shepherd, I shall not want.
2 He makes me lie down in green pastures,
he leads me beside quiet waters,
3 He restores my soul.
He guides me in paths of righteousness
for his name's sake.
4 Even though I walk through
the valley of the shadow of death,
I will fear no evil, for you are with me;
your rod and your staff, they comfort me.
5 You prepare a table before me
in the presence of my enemies.
You anoint my head with oil;
my cup overflows.
6 Surely goodness and love will follow me
all the days of my life,
and I will dwell in the house
of the LORD forever. Amen
I talked with Bailey's Special Needs Coordinator and she was so excited to tell me how Bailey had done is school that day. During recess in their room the kids get out toys and games to play with. Usually Bailey just draws. Well on this particular day, he had chosen a book. Now that may sound like it's nothing but for Bailey it's big. He can't focus long enough to keep his eyes on a sentence let alone a book. See, Bailey's medication had been changed and this was the first day he had started it. But this was by no means all that Bailey had in store for us that day. Later on, the class was given an assignment to write about something in the future. Baileys work is significantly altered. So his assignment would maybe be to draw it. He decided that he was going to write like the rest of the class, and without any help, he wrote five sentences ALL BY HIS SELF. No one helped or looked over his shoulder. Normally Bailey can't write ONE sentence, but to be able to form five sentences, write them down, and use some punctuation is astounding for him. Mrs.Vickie (Special Needs Coordinator) bragged and bragged about him which is very important for him. He needs some major confidence boosting.
Bailey can relate to Psalms 23 so well
1 The Lord is my shepherd, I shall not want.
2 He makes me lie down in green pastures,
he leads me beside quiet waters,
3 He restores my soul.
He guides me in paths of righteousness
for his name's sake.
4 Even though I walk through
the valley of the shadow of death,
I will fear no evil, for you are with me;
your rod and your staff, they comfort me.
5 You prepare a table before me
in the presence of my enemies.
You anoint my head with oil;
my cup overflows.
6 Surely goodness and love will follow me
all the days of my life,
and I will dwell in the house
of the LORD forever. Amen
Monday, March 9, 2009
There's no one else like Haydn
Haydn is twelve years old. He's a very compassionate and caring child. He loves history and he was recently baptized. I thank God for answering my prayers that Haydn has chosen the pathway to heaven. He has blossomed into a wonderful Christian. He's like a sponge when it comes to the bible. Haydn likes to debate with a kid that he goes to school with. His friend has an Atheist view and Haydn is out to show him the Truth!
Haydn was 6lbs. 3oz. when he was born. A tiny little thing. He didn't put on weight or grow like other children. He fell into the -10th percentile for height and weight so when he was around two, the doctor ran test to see why he was so small. They found that he had a hormone deficiency and a bone age delay, (that meant that his bones were approximately two years younger than his chronological age). The bone age delay was actually a good thing. This meant that he could hit a giant growth spurt. Haydn was monitored to make sure he didn't fall lower on the growth chart. When it seemed like he wasn't going to hit the growth spurt, the Endocrinologist thought that we should consider growth hormone shots. :-( This terrified me. I have a huge phobia of needles,(yes even after having three kids) but I was determined that if Haydn needed them then I would just have to make do. The doctor, Greg and I all agreed that we would wait until it seemed like his size bothered him. When he was in the fourth grade, Greg was taking him to school one day and unconsciously started to tie Haydn's shoe(old habits die hard), Haydn got very upset! He said that with his size and his dad tying his shoe, it made him look like a second grader. He was right. So I made another appointment with the Endocrinologist. Being a specialist, it's hard to get in sometimes. That acutualy worked in our favor because Haydn hit that growth spurt. He went from a size ten to a twelve-fourteen within a month. Then two months after he was in a fourteen-sixteen. Now there's no growth problems.
Yeah for Haydn! (and yeah for me and NO needles)
Haydn was 6lbs. 3oz. when he was born. A tiny little thing. He didn't put on weight or grow like other children. He fell into the -10th percentile for height and weight so when he was around two, the doctor ran test to see why he was so small. They found that he had a hormone deficiency and a bone age delay, (that meant that his bones were approximately two years younger than his chronological age). The bone age delay was actually a good thing. This meant that he could hit a giant growth spurt. Haydn was monitored to make sure he didn't fall lower on the growth chart. When it seemed like he wasn't going to hit the growth spurt, the Endocrinologist thought that we should consider growth hormone shots. :-( This terrified me. I have a huge phobia of needles,(yes even after having three kids) but I was determined that if Haydn needed them then I would just have to make do. The doctor, Greg and I all agreed that we would wait until it seemed like his size bothered him. When he was in the fourth grade, Greg was taking him to school one day and unconsciously started to tie Haydn's shoe(old habits die hard), Haydn got very upset! He said that with his size and his dad tying his shoe, it made him look like a second grader. He was right. So I made another appointment with the Endocrinologist. Being a specialist, it's hard to get in sometimes. That acutualy worked in our favor because Haydn hit that growth spurt. He went from a size ten to a twelve-fourteen within a month. Then two months after he was in a fourteen-sixteen. Now there's no growth problems.
Yeah for Haydn! (and yeah for me and NO needles)
Monday, March 2, 2009
Bailey's journey so far...
Bailey is my happy-go-lucky eight year old son. He is always on the move and he loves to be outside working or playing with his cars and diggers. About three years ago he started having incontinence problems. It was around the same time that we had just moved and he had started Kindergarten. No matter what people say, I will never forgive myself for disciplining him for having accidents. Telling him that he "knew better" or "why can't you stop playing long enough to use the bathroom"? But we all felt like it was a stage or rebellious period he was going through. This went on for a year. Then at his yearly check-up, I mentioned to the doctor about this "rebellious stage". Five minutes later Bailey was having x-rays of his abdomen. This showed that his bowels were full from the top of his small intestines to the bottom of the large intestines. The doctor explained a few reasons of why this was, but along with a growth spurt that Bailey had, she suspected that he had a "tethered spinal cord".
After numerous and evasive testing of his bowels and bladder, other specialists concluded that though they couldn't "see" the tethered cord on MRI's, and the measurements of his bladder showed that he could only hold one third that of a normal child, he should go see a pediatric neurosurgeon.
After seeing the neurosurgeon a few times, we decided to go ahead with the spinal surgery. Through all of this Bailey was talked to as a person and NOT a patient or number. He was asked what he thought about all of this and he was even explained to about the procedure. Bailey asked questions and the doctor answered him in English terms :-) They have become good buddies.
Bailey's surgery was scheduled for Dec. 3rd 2007. Then he was scheduled to have a C/T scan a week before the surgery for precautionary measures and to see the levels of spinal fluid in the brain and spin..................
I will never forget that phone call.
The next day after the C/T, the Dr. office called. They wanted us to come in the next day. They had found a mass in Bailey's brain..........
That night was the worst Hell I could ever think of.
Greg and I held each other and prayed. We prayed and cried most of the night. I wanted so bad to hold Bailey and rock him all night, but I didn't disturb him. Instead I just watched him sleep. At the Dr. the next day, I put on my most brave face and held Bailey's hand as the Dr. explained everything to us about what they had found.
The mass was a cyst. An area in the brain that was filling with fluid and that fluid had nowhere to go. Many people have these all their lives and never know. But for Bailey, the cause of alarm was the size. A tennis ball size cyst in the left temporal lobe was pushing on Bailey's brain and caused the mid-line to shift. It also caused a bulge in the scull, the optical nerve to shift and his eye to droop. The Dr. was surprised it hadn't caused a grand maul seizure.
Now the spinal surgery was out until the cyst was taken care of. The Dr. told us that if we did the spinal first it would have caused posible brain damage. He said "It's like opening the wrong valve. Part of the brain would be sucked down into the spine."
Now I look at the tethered cord as a blessing in disguise. We thank you LORD. Had we not found it, then we wouldn't have found the cyst. I know my GOD works in myserious ways.
We now have a tradition that Bailey loves. On the night before surgery, he gets to pick any resturant to go eat at around ten o'clock. This means he gets to stay up late and that's cool!!
Bailey's surgery went well. the Dr. said that the brain was under a tremendous amount of pressure.
I've been so proud of my little man for coming through this shinning. That was until I saw what kind of paitient he was. Maybe I bragged too much...I don't know. My "little man" was being stubborn. He refused to tell us if he was in pain because he didn't want any medicine. I've never seen him so mean before. So agitated and ugly. So instead of the nurses asking him about the pain, they would ask me. And watching his body language I could tell. Recovery was hard. Instead of a few days Bailey ended up staying seven days in the hospital. The shunt that he had going from his brain down to his abdomon, just under the skin, was causing him to vomit. Every time the OTs got him out of bed, he'd get sick. Finally the valve on the shunt was adjusted to a lower setting, and the next time the OT got him out of bed, he didn't get sick...finally we came home.
My mother, bless her soul. She got the family, my two other children and my friends to come to my house and decorated it for Christmas. Normally nothing gets by me, but that day I was floored. All I could do was cry. She had taken care of everything. Now all I had to do was take care of Bailey and not worry about anything. That Christmas break, out of the goodness of her heart, Bailey's first grade teacher came and tutored him a few times a week. She will always have a special place in my heart.
With that surgery under our belts, it was then time for the spinal surgery. It was scheduled for June 2008. That one seemed like a breeze compared to the first one. Bailey felt the same. Four days post-op, and still on muscle relaxers, he was tring to run out side with the neighbor hood kids!! AHHHH! I couldn't hold him down.
Bailey still has many hurddles to jump. We have recently found that he has memory loss in long term and short term, he needs vision therapy, and he has concentration issues. He is now in OT and Speech therapy, but unfortunatly with all the medical bills we have accumulated, we can't aford to do vision therapy. Hopefully sometime soon we will.
I thank GOD for blessing me with three most wonderful children, and also for humbling me and showing me that HE is at work in everything around us.
After numerous and evasive testing of his bowels and bladder, other specialists concluded that though they couldn't "see" the tethered cord on MRI's, and the measurements of his bladder showed that he could only hold one third that of a normal child, he should go see a pediatric neurosurgeon.
After seeing the neurosurgeon a few times, we decided to go ahead with the spinal surgery. Through all of this Bailey was talked to as a person and NOT a patient or number. He was asked what he thought about all of this and he was even explained to about the procedure. Bailey asked questions and the doctor answered him in English terms :-) They have become good buddies.
Bailey's surgery was scheduled for Dec. 3rd 2007. Then he was scheduled to have a C/T scan a week before the surgery for precautionary measures and to see the levels of spinal fluid in the brain and spin..................
I will never forget that phone call.
The next day after the C/T, the Dr. office called. They wanted us to come in the next day. They had found a mass in Bailey's brain..........
That night was the worst Hell I could ever think of.
Greg and I held each other and prayed. We prayed and cried most of the night. I wanted so bad to hold Bailey and rock him all night, but I didn't disturb him. Instead I just watched him sleep. At the Dr. the next day, I put on my most brave face and held Bailey's hand as the Dr. explained everything to us about what they had found.
The mass was a cyst. An area in the brain that was filling with fluid and that fluid had nowhere to go. Many people have these all their lives and never know. But for Bailey, the cause of alarm was the size. A tennis ball size cyst in the left temporal lobe was pushing on Bailey's brain and caused the mid-line to shift. It also caused a bulge in the scull, the optical nerve to shift and his eye to droop. The Dr. was surprised it hadn't caused a grand maul seizure.
Now the spinal surgery was out until the cyst was taken care of. The Dr. told us that if we did the spinal first it would have caused posible brain damage. He said "It's like opening the wrong valve. Part of the brain would be sucked down into the spine."
Now I look at the tethered cord as a blessing in disguise. We thank you LORD. Had we not found it, then we wouldn't have found the cyst. I know my GOD works in myserious ways.
We now have a tradition that Bailey loves. On the night before surgery, he gets to pick any resturant to go eat at around ten o'clock. This means he gets to stay up late and that's cool!!
Bailey's surgery went well. the Dr. said that the brain was under a tremendous amount of pressure.
I've been so proud of my little man for coming through this shinning. That was until I saw what kind of paitient he was. Maybe I bragged too much...I don't know. My "little man" was being stubborn. He refused to tell us if he was in pain because he didn't want any medicine. I've never seen him so mean before. So agitated and ugly. So instead of the nurses asking him about the pain, they would ask me. And watching his body language I could tell. Recovery was hard. Instead of a few days Bailey ended up staying seven days in the hospital. The shunt that he had going from his brain down to his abdomon, just under the skin, was causing him to vomit. Every time the OTs got him out of bed, he'd get sick. Finally the valve on the shunt was adjusted to a lower setting, and the next time the OT got him out of bed, he didn't get sick...finally we came home.
My mother, bless her soul. She got the family, my two other children and my friends to come to my house and decorated it for Christmas. Normally nothing gets by me, but that day I was floored. All I could do was cry. She had taken care of everything. Now all I had to do was take care of Bailey and not worry about anything. That Christmas break, out of the goodness of her heart, Bailey's first grade teacher came and tutored him a few times a week. She will always have a special place in my heart.
With that surgery under our belts, it was then time for the spinal surgery. It was scheduled for June 2008. That one seemed like a breeze compared to the first one. Bailey felt the same. Four days post-op, and still on muscle relaxers, he was tring to run out side with the neighbor hood kids!! AHHHH! I couldn't hold him down.
Bailey still has many hurddles to jump. We have recently found that he has memory loss in long term and short term, he needs vision therapy, and he has concentration issues. He is now in OT and Speech therapy, but unfortunatly with all the medical bills we have accumulated, we can't aford to do vision therapy. Hopefully sometime soon we will.
I thank GOD for blessing me with three most wonderful children, and also for humbling me and showing me that HE is at work in everything around us.
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