We went to see Kaiden's Doctor Yesterday.. He doesn't have to wear his helmet anymore.. YEAH... There are a few abnormalities but we are crossing our fingers that this will fix itself over the next few years. My little guy is getting so big. He is now almost 16 months.. Wow this year has went by way to fast.. Kaitlyn is now 6 she just graduated Kindergarten. She is doing amazing as well. Thank you all for you prayers and help this last year.. We are trying to put together a Craino walk here in Utah. I am so excited to get the word out about my kiddo's condition.
Well off to take care of the little ones.. Will write more soon.
Love you All!!!
Friday, May 28, 2010
Saturday, December 5, 2009
December has arrived!!
I have not wrote in such a long time.. I am getting so bad at this..
Ok updates first.. Kaiden had surgery and did great! We had to stay at Primary Children's hospital for an extra 20 days because he somehow got Salmonella poisoning and was very sick. He recovered perfect from both.
Because of this, the Helmet company came to him in the hospital and fitted him after the surgery and brought in his helmet. The 1st helmet we wanted to paint.. So we made it look like a University of Utah football helmet.. Adorable. The second we have just left clear. He is doing so great with the helmet therapy. I was worried that he wouldn't be able to sleep, or it would be too heavy and he would be misserable, I was worried he wouldn't be able to walk or crawl or even roll over.. Geez I am silly with all this.. The best thing is he doesn't mind it at all. He actually enjoys wearing it. When he has it off to bath he looks everywhere for it.. It is so light and fitt's perfect I have no idea what I was worried about..
My little guy is 25 pounds, 11 months, and I can't believe how fast he is growing. He has started to walk about 2 weeks ago. I can't keep up with him. He is the happest baby ever. I say it all the time.. I have really saved the best baby for last.. He never cry's, always sings and smiles.. He is absolutely amazing!!
I have been doing allot of things with CappsKids.org I love the site. When Kaitlyn was born my mom found this site and was looking at pictures and said "Kaitlyn has Sagittal Craino" I looked on there and sure enough she looked just like all these beautiful baby's. I am so happy to have found this site and so I owe allot to them. They have done a 2010 Calendar and chose my kids to be in a lot of months. Adorable and we get to give back to this wonderful site.
Thanksgiving was a blast we went to my mom's house and ate the best food and had the best company. My family is amazing. So supportive. I love any extra time I get to spend with them.
My kiddo's got "the elf on the shelf" this last week.. It has been so much fun. The elf sits and watches the kids all day and at night reports to santa what he has seen good and bad. The next morning when the kids get up they run around the house looking for him because after he returns from the North Pole he always sit's in a new spot. This has been such a fun and exciting new tradition for our family. And the best part is they are acting so much better knowing that this little elf that we named Fred is always watching..
Wow Christmas is right around the corner.. I can't believe how fast this year has went by. My little guy is almost 1. My kids are all growing up so fast.. I wish I could stop time for a few years. Well mommy duties are calling but I will post more often.. Promise....
Monday, May 11, 2009
Surgery in 2 days.
I am having a very hard time knowing what is ahead of my little guy. I am putting off other things like homework, reading, and playing with my kids.. I am just trying to spend as much time with Kaiden as I can. I keep having bad dreams that the Dr comes out and has bad news.. I am trying to use the Secret that all will be ok.. After all, we have gone through this before. I know the Dr's are amazing and that the Lord will be with them and Kaiden. I find myself crying most of the day and I can't snap out of it.. I have prayed so hard the last few days and will continue. Kaiden is going to be getting a blessing the day before surgery and his name is on the prayer list at the Temple I know that all of this will help. I know my other kids need me and my house work needs to be done I just can't hardly get out of bed... I start to do a project to get my mind off of what is coming and then I just stop look at my beautiful baby and start crying again. I need to keep thinking of the positive and focus on the fact that Kaiden can be "fixed" he doesn't have something that he can die from or something that he will have to struggle with forever. This will be a short amount of time and then he will be ok. Thank you to all of my Family and friends who are going to help take care of my other kids and just be there for a shoulder to cry on. I am so happy to have awesome friends and family..
Thursday, April 30, 2009
Update
Kaiden was scheduled for surgery. Two days before he started coughing so I brought him in to our Dr... He was diagnosed with RSV. His Oxygen stats were 83 the dr's said just continue doing breathing treatments and all would be ok.. I live about 30 miles from an amazing childrens hospital. I decided to bring him up there for a second opnion. I am very glad I did because they admitted him right away. He stayed in the hospital for 3 days.. Surgery was postponed for 8 weeks. It is way too dangerious to do surgery on a child that has RSV so we wait.. New surgery day is May 13th. My little guy continues to grow so fast. He is getting so big. Learning new things. I swear he said "I love you".. He just started eating baby cereal and loves it.. My other children are fasicanated by Kaiden they love to help and we all were watching him take his 1st bite. It is pretty cool everyone helps out so much! It is like having a 1st child all over again... I love being a mom!! We have an appointment the day before surgery to get Kade fitted for his stying helmet.
I find myself with the hand sanitizer all of the day I dont want him to get sick again. I am seriously considering taking my older kids out of school. There is only 4 weeks left. I just know they need to be learning so I dont know what to do at this point.
I met an amazing person today you know the kind of person you will never forget. The kind you wish you could talk to every day because they just lift your spirits. She is going to paint Kaiden's helmets I am so excited to see how it goes. We were thinking about one being a race car helmet or a football one.
Surgery is 13 days away.. It is a bitter sweet.. I want to get this done but I know what is ahead of my little guy. He has such a great attitude. Smiles all the time sleeps through the night. The best baby ever.. Even when he is crying he is trying to smile.. I am very scared that it will change him. I find myself looking at him and just starting to cry.. I know what is comming for my little man. I wish I could just fix it and take the pain away that is coming.. I have confidence in the Dr's and staff at the hospital and I know that everything will go as planned.. Just still very scared. :(
I find myself with the hand sanitizer all of the day I dont want him to get sick again. I am seriously considering taking my older kids out of school. There is only 4 weeks left. I just know they need to be learning so I dont know what to do at this point.
I met an amazing person today you know the kind of person you will never forget. The kind you wish you could talk to every day because they just lift your spirits. She is going to paint Kaiden's helmets I am so excited to see how it goes. We were thinking about one being a race car helmet or a football one.
Surgery is 13 days away.. It is a bitter sweet.. I want to get this done but I know what is ahead of my little guy. He has such a great attitude. Smiles all the time sleeps through the night. The best baby ever.. Even when he is crying he is trying to smile.. I am very scared that it will change him. I find myself looking at him and just starting to cry.. I know what is comming for my little man. I wish I could just fix it and take the pain away that is coming.. I have confidence in the Dr's and staff at the hospital and I know that everything will go as planned.. Just still very scared. :(
Tuesday, March 3, 2009
They say you're never given more then you can handle.
As a mother you have to handle what you are given even if it is too much.
Everyone has a story.
This is ours.................
Craniosynostosis is one of the most common physical deformities of a fetus or newborn, occurring in about 1 in every 2,000 to 2,500 births. Craniosynostosis is the premature fusing of an infant's skull sutures. Our kids have the Sagittal suture. A baby's skull has 5 thin boney plates that are held together by a fiber-like mat. Over time, the sutures harden and close (fuse) the skull bones together. When a baby has craniosynostosis one or more of these sutures close too early restricting skull and brain growth. This causes the baby's head to become abnormally shaped and requires surgery. Craniosynostosis always requires surgery. Most parents have never heared of this condition. We were one of them.
Kaitlyn Johanna was born on 3/25/2004. After a long hard labor and delivery she came into the world at 3:30pm. Right away I noticed something wasn't right with the shape of her head. The Dr's and nurses assured me that she just had a "cone Head" and it would go away. My mom started doing research on the internet and found all these babies that looked exactly like Kaitlyn. I asked my Dr at her 2 week check up and again was told to lay her on her back and the "cone head" would go away. Then at her 6 week check up was told the same thing at this point I was not satisfied and insisted on x rays. We had x rays done at Primary Children's Medical center. Within an hour I had a call from my Dr saying she had Sagittal Craniosynostosis. We had our 1st appointment with Dr Walker the Neurosurgeon the next week. (http://neurosurgery4kids.net/walker.htm) and he told us that they like to do the surgery to fix this before they are 2 months old so it was a good thing we got there when we did. Everything at this point happened so fast. Kaitlyn had surgery on 5/25/2004. 2 Months old to the day. She underwent 5 hours of reconstructive surgery. The surgeons made a zig zag incision from ear to ear in order to reconstruct Kaitlyn's skull. She had the Open technique. This surgery is performed in the operating room under general anesthesia. A flap of skin, tissue and muscle below the skin, and the tissue covering the bone are loosened and raised up so the surgeon can see the bone. Then a strip of bone is removed where 2 sutures connect. Bones are then put into place using a plate with screws that go into the skull. After the open surgery, Kaitlyn was taken to an intensive care unit (ICU) for 3 hours then moved to a regular hospital room. My husband and I had prepared ourselves by looking at pictures on the interent as to how Kaitlyn would look after surgery. He was going to go in and see her then come let me know how she looked. After all the research and pictures nothing prepared me for what I saw. She was so swollen and screaming. I will never forget her cry to this day. I wanted to take her in my arms and let her know mommy is hear but I was so scared to hold her. She stayed in the hospital for 5 days. They did Tests to see if she lost too much blood during surgery. She never had to have a blood transfusion 90% of babies do. She had swelling and bruising around their eyes and face. Her eyes were swollen shut for 3 days. She then started to get better she was so strong every day it was so amazing watching her recover. She had a 6 month post op that went great. Everything went very well and continues to go great. Kaitlyn is now 5 years old. Never has had any other problems.
Doctors do not fully understand what causes craniosynostosis. Up to 20% of babies with craniosynostosis have inherited a genetic trait from one or both parents that results in the condition.
When I found out I was pregnant I made an appointment right away with the neurosurgeon. He assured me that there was only a 4% chance of having another baby with craniosynostosis and he laughed saying he would not be seeing me again. During my pregnancy my Dr knew I was concerned with my son having craniosynostosis. I did everything right this time. I made sure of it. We did plenty of ultrasounds all saying his head looks "perfect".
Kaiden Lee was a stubborn one.. He was 7 days late, after a failed induction we tried again on January 2,2009 this time was a success. Kaiden was born at 3:20 pm. Right when he came out everyone in the room just looked at eachother. I then asked how is his head. The nurse said looks good. Everyone was very relieved. After my son was warmed up and dressed the nurse handed me my boy.. His head wasn't right. I looked at my husband and just stared to cry. Everyone said no you are silly his head looks great just a cone head from being born.. again with the "cone head thing". When his pediatrician came in the next day we asked about his head. He told us that there is no way to tell this early. I knew Kaiden had Craniosynostosis. My husband had higher hopes he kept telling me I was just being paranoid. I made a Dr appointment the day after I got out of the hospital for the Neurosurgeon. Dr Walker walked into the room and started shaking his head. He said I can't believe this. I guess the dr's hadn't seen a 2 week old in a long time and a bunch of surgeon's came in to take a look. My husband just started to cry, remember he still thought that I was just being "paranoid" and that all was ok. Dr Walker introduced us to Dr Kestle (http://neurosurgery4kids.net/kestle.htm) a neurosurgeon that was trained on a new surgery for craniosynostosis. and Dr Siddiqi (www.utahhealthsciences.net/pageview.aspx?id=16740) the plastic surgeon. Kaiden was a canidate for endoscope surgery. A newer kind of surgery that is used for children 3 to 6 months old. The surgeon makes 1 or 2 small cuts in the scalp. Most times they are each just 1 inch long. These incisions are made above the area where the bone needs to be removed. An endoscope (a tube that allows the doctor to see in) is passed through the small cuts. Special medical devices and a camera are passed through the endoscope. Using these devices, the surgeon removes some bone through the incisions. This surgery usually takes about 1 hour. There is much less blood loss with this kind of surgery. Most children need to wear a special helmet to protect their head for a period of time after surgery.
Kaiden is going to have Endoscope surgery on March 18, 2009. He will have to wear a helmet 23 hours a day for 12 months. I am dreading this day. I know that everything will work out and my little man will be fine. I will keep everyone posted on how he does.
If I could please ask everyone to keep my little guy in your prayers over the next few weeks. I could really use them.
Everyone has a story.
This is ours.................
Craniosynostosis is one of the most common physical deformities of a fetus or newborn, occurring in about 1 in every 2,000 to 2,500 births. Craniosynostosis is the premature fusing of an infant's skull sutures. Our kids have the Sagittal suture. A baby's skull has 5 thin boney plates that are held together by a fiber-like mat. Over time, the sutures harden and close (fuse) the skull bones together. When a baby has craniosynostosis one or more of these sutures close too early restricting skull and brain growth. This causes the baby's head to become abnormally shaped and requires surgery. Craniosynostosis always requires surgery. Most parents have never heared of this condition. We were one of them.
Kaitlyn Johanna was born on 3/25/2004. After a long hard labor and delivery she came into the world at 3:30pm. Right away I noticed something wasn't right with the shape of her head. The Dr's and nurses assured me that she just had a "cone Head" and it would go away. My mom started doing research on the internet and found all these babies that looked exactly like Kaitlyn. I asked my Dr at her 2 week check up and again was told to lay her on her back and the "cone head" would go away. Then at her 6 week check up was told the same thing at this point I was not satisfied and insisted on x rays. We had x rays done at Primary Children's Medical center. Within an hour I had a call from my Dr saying she had Sagittal Craniosynostosis. We had our 1st appointment with Dr Walker the Neurosurgeon the next week. (http://neurosurgery4kids.net/walker.htm) and he told us that they like to do the surgery to fix this before they are 2 months old so it was a good thing we got there when we did. Everything at this point happened so fast. Kaitlyn had surgery on 5/25/2004. 2 Months old to the day. She underwent 5 hours of reconstructive surgery. The surgeons made a zig zag incision from ear to ear in order to reconstruct Kaitlyn's skull. She had the Open technique. This surgery is performed in the operating room under general anesthesia. A flap of skin, tissue and muscle below the skin, and the tissue covering the bone are loosened and raised up so the surgeon can see the bone. Then a strip of bone is removed where 2 sutures connect. Bones are then put into place using a plate with screws that go into the skull. After the open surgery, Kaitlyn was taken to an intensive care unit (ICU) for 3 hours then moved to a regular hospital room. My husband and I had prepared ourselves by looking at pictures on the interent as to how Kaitlyn would look after surgery. He was going to go in and see her then come let me know how she looked. After all the research and pictures nothing prepared me for what I saw. She was so swollen and screaming. I will never forget her cry to this day. I wanted to take her in my arms and let her know mommy is hear but I was so scared to hold her. She stayed in the hospital for 5 days. They did Tests to see if she lost too much blood during surgery. She never had to have a blood transfusion 90% of babies do. She had swelling and bruising around their eyes and face. Her eyes were swollen shut for 3 days. She then started to get better she was so strong every day it was so amazing watching her recover. She had a 6 month post op that went great. Everything went very well and continues to go great. Kaitlyn is now 5 years old. Never has had any other problems.
Doctors do not fully understand what causes craniosynostosis. Up to 20% of babies with craniosynostosis have inherited a genetic trait from one or both parents that results in the condition.
When I found out I was pregnant I made an appointment right away with the neurosurgeon. He assured me that there was only a 4% chance of having another baby with craniosynostosis and he laughed saying he would not be seeing me again. During my pregnancy my Dr knew I was concerned with my son having craniosynostosis. I did everything right this time. I made sure of it. We did plenty of ultrasounds all saying his head looks "perfect".
Kaiden Lee was a stubborn one.. He was 7 days late, after a failed induction we tried again on January 2,2009 this time was a success. Kaiden was born at 3:20 pm. Right when he came out everyone in the room just looked at eachother. I then asked how is his head. The nurse said looks good. Everyone was very relieved. After my son was warmed up and dressed the nurse handed me my boy.. His head wasn't right. I looked at my husband and just stared to cry. Everyone said no you are silly his head looks great just a cone head from being born.. again with the "cone head thing". When his pediatrician came in the next day we asked about his head. He told us that there is no way to tell this early. I knew Kaiden had Craniosynostosis. My husband had higher hopes he kept telling me I was just being paranoid. I made a Dr appointment the day after I got out of the hospital for the Neurosurgeon. Dr Walker walked into the room and started shaking his head. He said I can't believe this. I guess the dr's hadn't seen a 2 week old in a long time and a bunch of surgeon's came in to take a look. My husband just started to cry, remember he still thought that I was just being "paranoid" and that all was ok. Dr Walker introduced us to Dr Kestle (http://neurosurgery4kids.net/kestle.htm) a neurosurgeon that was trained on a new surgery for craniosynostosis. and Dr Siddiqi (www.utahhealthsciences.net/pageview.aspx?id=16740) the plastic surgeon. Kaiden was a canidate for endoscope surgery. A newer kind of surgery that is used for children 3 to 6 months old. The surgeon makes 1 or 2 small cuts in the scalp. Most times they are each just 1 inch long. These incisions are made above the area where the bone needs to be removed. An endoscope (a tube that allows the doctor to see in) is passed through the small cuts. Special medical devices and a camera are passed through the endoscope. Using these devices, the surgeon removes some bone through the incisions. This surgery usually takes about 1 hour. There is much less blood loss with this kind of surgery. Most children need to wear a special helmet to protect their head for a period of time after surgery.
Kaiden is going to have Endoscope surgery on March 18, 2009. He will have to wear a helmet 23 hours a day for 12 months. I am dreading this day. I know that everything will work out and my little man will be fine. I will keep everyone posted on how he does.
If I could please ask everyone to keep my little guy in your prayers over the next few weeks. I could really use them.
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