Friday night about 11:00pm Ella started to become very fussy screaming, we couldnt calm her down all night. At 7am I checked her temp and she was at 102.1, I called her doctor and he was very concerned with her since there was no other symptoms. We spent the morning in the hospital running tests. Sometimes a fever can be linked to DWS, so they did tests to see if Ella might have a disease that is associated with DWS. 3 nurses and I held her down and put an IV in her scalp to draw blood and set up fluid. This was very odd to me, I have never seen a IV put in the scalp. According to the nurse this is used quite often in infants in the hospital, its easier to get a IV in the scalp than the arm or leg because of all the moving around a baby does. It was pretty hard on me to watch this and see Ella suffer the hurt of it. Bu I also knew it was for a good cause, so they could figure out what was going on. The doctor came in and talked to me, he said that everything came back normal. That he is unsure why she is running a fever. He said that she could be coming down with something, it just hasnt shown up in her yet. They decided to release her pending if her fever got high again. Ella's fever hasnt gone back to normal range all weekend. The lowest it has been is 99.6, which is a fever in a infant, just not a dangerous high. So far no other symptoms are still showing as of this morning. I have contacted the doctor and waiting for a call from him.
The concern I have is her PDA and her DWS what if this is something associated with one of those? Thank you for all the prayers that have been over flowing. Thank you to my Aunt LaRue for putting Ella's name in the temple, she has done this since Ella was born. We love you Aunt Larue, thank you for thinking of us and all your support. Also a HUGE thank you to my friend Jamie, she also has a prayer request in to SMCC, we have support from people we havent even met. Thank you to my parents and all other family and friends that have prayers and love for my beautiful girl. I just know with all the prayers and support we can make it through all of this bumps. Ella has a lot of love and support! I will update with any news.
Monday, October 29, 2012
Thursday, October 25, 2012
PDA
They did a lot of heart tests on her heart EKG, Ultrasound of the heart and many more. Come to find out Ella has a PDA
Patent ductus arteriosus
Patent ductus arteriosus (PDA) is a condition in which the ductus arteriosus does not close. (The word "patent" means open.)
The ductus arteriosus is a blood vessel that allows blood to go around the baby's lungs before birth. Soon after the infant is born and the lungs fill with air, the ductus arteriosus is no longer needed. It usually closes in a couple of days after birth.
PDA leads to abnormal blood flow between the aorta and pulmonary artery, two major blood vessels that carry blood from the heart.
The doctor would like to see if it will close on its own in a month. But If Ella develops weight gain, or stops eating than we would need to get her in quick. If the PDA does not close on its own we will have to either take a catheter in and close it. If Ella is too small for a catheter than we will be forced to do open heart surgery.
Please keep your thoughts and prayers with Ella as well as our family as we fight this! The more prayers the better chance we have of fighting this! Many thanks and love to the support.
The ductus arteriosus is a blood vessel that allows blood to go around the baby's lungs before birth. Soon after the infant is born and the lungs fill with air, the ductus arteriosus is no longer needed. It usually closes in a couple of days after birth.
PDA leads to abnormal blood flow between the aorta and pulmonary artery, two major blood vessels that carry blood from the heart.
The doctor would like to see if it will close on its own in a month. But If Ella develops weight gain, or stops eating than we would need to get her in quick. If the PDA does not close on its own we will have to either take a catheter in and close it. If Ella is too small for a catheter than we will be forced to do open heart surgery.
Please keep your thoughts and prayers with Ella as well as our family as we fight this! The more prayers the better chance we have of fighting this! Many thanks and love to the support.
Saturday, October 20, 2012
update
I have been quite a slacker on updating the blog lately. Thought I better find sometime and get it updated.
Ella has shown some great signs of meeting her milestones. Tuesday the 16th of October we had taken our dog Oliver in to be seen at the Vet Emergency, he had a really hard day vomiting. As we were waiting to hear on his blood results. Matt came from in the waiting room into me waiting with Oliver and said Ella has started laughing. He said "watch" as Matt tickled her around her neck and chest she started giggling. It was so cute. It wasn't just once it was a lot of times.
Yesterday I tested her to see how alert she is, I walked from one end of the room to the next. Ella would follow me with her eyes and move her head as I walked around. She kept her eyes on me the whole time. Well not the whole time, while Brayden was trying to be involved she would also watch him.
Her hand motion has become great also. When she wants a binkie or bottle, instead of crying first she will put her fingers and fist in her mouth.
I have started to put her in her crib for about15 minutes while I try to get ready in the mornings. She loves her musical toys that go around in a circle above her head. She smiles so big at them and puts her hands up for them. She also holds things now, toy keys, rattles, her binkie. She takes them to her face, sometimes even accidentally smacks herself with them. OUCH!
Ella has been having a hard time keeping her head up, which does have me a little concerned. But I will talk to the Physical Therapist about that this week. She also has a wellness visit this Wed. So we will see how big shes getting.
As far as the neurosurgeon we dont need to see him for 6 months unless Ella shows signs of pressure in her brain. We also saw the orthopedic surgeon a few weeks ago and she said that Ella's hip is 100% developed now. We will see the ortho in 3 months to follow up with an xray to make sure that things are still progressing.
While Ella has shown a lot of improvement we still have a full year ahead of us. I have learned that I can not compare Ella and her meeting her milestones with normal 4 month olds. Children learn on there own terms and what one may be doing the other may not. Its been hard for me to realize that learning things is not going to happen overnight, its a process and sometimes it can be a very long process.
At 4 months I started feeding Brayden solids. But it was because he was sitting up on his own. Ella is doing none of this and I most likely wont start her till 6 months.
Please keep Ella in your prayers, we need prayers at all times. I really believe that all the prayers we receive for Ella is helping her succeed in things that I didnt know if she would or not.
Thank you for all your support and love. Its been quite a journey for all of us the last 4 months, but the journey makes us stronger. The strength in us will continue to grow as we go.
Ella has shown some great signs of meeting her milestones. Tuesday the 16th of October we had taken our dog Oliver in to be seen at the Vet Emergency, he had a really hard day vomiting. As we were waiting to hear on his blood results. Matt came from in the waiting room into me waiting with Oliver and said Ella has started laughing. He said "watch" as Matt tickled her around her neck and chest she started giggling. It was so cute. It wasn't just once it was a lot of times.
Yesterday I tested her to see how alert she is, I walked from one end of the room to the next. Ella would follow me with her eyes and move her head as I walked around. She kept her eyes on me the whole time. Well not the whole time, while Brayden was trying to be involved she would also watch him.
Her hand motion has become great also. When she wants a binkie or bottle, instead of crying first she will put her fingers and fist in her mouth.
I have started to put her in her crib for about15 minutes while I try to get ready in the mornings. She loves her musical toys that go around in a circle above her head. She smiles so big at them and puts her hands up for them. She also holds things now, toy keys, rattles, her binkie. She takes them to her face, sometimes even accidentally smacks herself with them. OUCH!
Ella has been having a hard time keeping her head up, which does have me a little concerned. But I will talk to the Physical Therapist about that this week. She also has a wellness visit this Wed. So we will see how big shes getting.
As far as the neurosurgeon we dont need to see him for 6 months unless Ella shows signs of pressure in her brain. We also saw the orthopedic surgeon a few weeks ago and she said that Ella's hip is 100% developed now. We will see the ortho in 3 months to follow up with an xray to make sure that things are still progressing.
While Ella has shown a lot of improvement we still have a full year ahead of us. I have learned that I can not compare Ella and her meeting her milestones with normal 4 month olds. Children learn on there own terms and what one may be doing the other may not. Its been hard for me to realize that learning things is not going to happen overnight, its a process and sometimes it can be a very long process.
At 4 months I started feeding Brayden solids. But it was because he was sitting up on his own. Ella is doing none of this and I most likely wont start her till 6 months.
Please keep Ella in your prayers, we need prayers at all times. I really believe that all the prayers we receive for Ella is helping her succeed in things that I didnt know if she would or not.
Thank you for all your support and love. Its been quite a journey for all of us the last 4 months, but the journey makes us stronger. The strength in us will continue to grow as we go.
Tuesday, October 2, 2012
Physical Therapy
Today we had Physical Therapy, we did more paper work than anything. We set up goals for the next 6 months to achieve. Because of Ella's low muscle tone, she is going to develop slower than I child with normal muscle tone. Which part of me feels really bad, but I also know if we keep on things that she will be okay. We are going to work on making her neck stronger so hold her head up and rolling on her left side. Right now Ella is favoring the right side, she rolls over on it when I am changing her diaper and just laying there. She needs to be rolling on both sides equally. We are going to also work on her holding things, rattle ect. So far she holds things, but she lets go after a few minutes. I am so proud of Ella and the strength she has. Sometimes she gives up and lets her head go to her chest, but I watch her closely and can see that she really wants to try. Early intervention has been such a blessing. I have had parents tell me that early intervention was never told to them and now there children are way behind on developing.
We have our appointment Oct 8th with the orthopedic surgeon to go over her hip. If she ends up in a brace its going to delay things a little bit with her developing. But once the brace is off, we will get back in gear to get her back on track.
Ella was diagnosed a few weeks ago with Thrush, we were able to cure it with a medication from the doctor. But we woke up this morning and its back in full force. So the doctor has called in another medication to hopefully take it away forever. Keeping our fingers crossed.
As far as Ella's acid reflex shes doing great. The doctor put her on Zantac and Previcid and since we started she hasnt cried or arched her back. So hopefully these medications will continue to work and not cause pain.
We have been working on Ella crying in her car seat while in the car. She has done a little better with keeping her acid reflex under control but its still really bad. So we had a suggestion today to swaddle her in the car seat. So we will try that next and see if we have any progress. Any suggestions would be great?
Thanks to all that reads our updates, we appreciate all the support and love for our beautiful girl!
We have our appointment Oct 8th with the orthopedic surgeon to go over her hip. If she ends up in a brace its going to delay things a little bit with her developing. But once the brace is off, we will get back in gear to get her back on track.
Ella was diagnosed a few weeks ago with Thrush, we were able to cure it with a medication from the doctor. But we woke up this morning and its back in full force. So the doctor has called in another medication to hopefully take it away forever. Keeping our fingers crossed.
As far as Ella's acid reflex shes doing great. The doctor put her on Zantac and Previcid and since we started she hasnt cried or arched her back. So hopefully these medications will continue to work and not cause pain.
We have been working on Ella crying in her car seat while in the car. She has done a little better with keeping her acid reflex under control but its still really bad. So we had a suggestion today to swaddle her in the car seat. So we will try that next and see if we have any progress. Any suggestions would be great?
Thanks to all that reads our updates, we appreciate all the support and love for our beautiful girl!
Monday, September 24, 2012
Appointment with pediatrician
Today we had an appointment with a pediatrician. The doctor looked at both of Ella's ears and said that he saw no infection or fluid. He also sees no redness in her throat. The doctor thought that if she failed the hearing that Ella might have started a cold or something else. So far we are not seeing anything and are not too worried about the re testing of the hearing. We are sure she will pass. He also said that her thrush infection is gone, that we only have to do 2 more days of the medication to make sure it doesnt come back.
As for her being very fussy and not calming down. He really thinks her acid reflex has got worse. So he changed Ella from Zantac to a stronger medication.
We also talked about Ella and her screaming in her car seat. Ella's doctor said that his daughter did the same thing till she was 6 months. He said we are doing everything we can. That she will come out of it, but it might take a while.
Ella was also weighed in at 10 lbs 4oz, its amazing how fast my little girl is growing. She was born at 6lbs and in 3 months she is already 10lbs. Ella makes us so happy, her cute smiles and her love for us. We love you pumpkin!
As for her being very fussy and not calming down. He really thinks her acid reflex has got worse. So he changed Ella from Zantac to a stronger medication.
We also talked about Ella and her screaming in her car seat. Ella's doctor said that his daughter did the same thing till she was 6 months. He said we are doing everything we can. That she will come out of it, but it might take a while.
Ella was also weighed in at 10 lbs 4oz, its amazing how fast my little girl is growing. She was born at 6lbs and in 3 months she is already 10lbs. Ella makes us so happy, her cute smiles and her love for us. We love you pumpkin!
Early Intervention Kauri Sue Hamilton
On Thursday the 20th, I took Ella to an evaluation at Kauri Sue. We met up with a great friend of ours Kimberly Butterfield, Kimberly was very sweet and helped me watch Brayden as we had Ella evaluated by a nurse. The nurse asked all about her history and my history during pregnancy. Nurse did an evaluation on her eyes and Ella did a great job following the lights. Ella than had a hearing test and passed her right ear, but her left only passed partially. The tech said that sometimes when babies do not pass, that it could be fluid caused by an infection.
Ella will be re tested on October 1st.
We were told that Kauri Sue will do physical therapy at our home every other week till Ella reaches 3 years old. At that time Ella will bus to Kauri Sue to learn things.
Ella has a lot of help and we are hoping with all the help she has that we can get passed the DWS and show that she can live beyond the learning disabilities.
I have had a few people say that DWS is not a disability. I have thought about this the last few days, and this is what I have to say about that.
Dandy Walker Syndrome symptoms vary from child to child. DWS could show, but never have a symptom. The symptoms that do show can go from slow learning, slow at developing, slow at crawling and walking. Or it could go to the extreme of being in a wheel chair and never being able to do things When people say that our children that have DWS is not a disability. They are wrong, no one will ever understand what you have to go through on a daily basis with a DWS child. Ella may have low symptoms as of right now, and we may have to watch her close over the next year. She could just have the fluid on her brain and no symptoms. Or over a course of the year she could develop problems that could require more help or even surgery. The disability she has is that she cant learn like a normal child. I can suggested if anyone wants more information to do research on it.
People can sit back and say its not that bad. To that I say be in our footsteps. Since Ella has been born, I have had at least 1 appointment to take her to. Last week we had 5 appointments. Every day, every two hours we work with Ella. Teaching her to hold her head up strong, by doing this it is going to help Ella strengthen her muscles. Ella has low muscle tone and she needs the extra help to allow her to do things like we do. We are also trying to teach her how to roll on her sides which we do this every 2 hours everyday. Ella is slowly learning from all the exercises but she still has a lot to go.
We know a lot of people dont understand and they dont know the meaning of DWS so they dont understand what we are going through. Please research it!!!! The more people that know, the more we can try and find a cure for this. DWS children deserve to have a normal life like us. and I will make sure our sweet Ella is able to be just like us.
Ella will be re tested on October 1st.
We were told that Kauri Sue will do physical therapy at our home every other week till Ella reaches 3 years old. At that time Ella will bus to Kauri Sue to learn things.
Ella has a lot of help and we are hoping with all the help she has that we can get passed the DWS and show that she can live beyond the learning disabilities.
I have had a few people say that DWS is not a disability. I have thought about this the last few days, and this is what I have to say about that.
Dandy Walker Syndrome symptoms vary from child to child. DWS could show, but never have a symptom. The symptoms that do show can go from slow learning, slow at developing, slow at crawling and walking. Or it could go to the extreme of being in a wheel chair and never being able to do things When people say that our children that have DWS is not a disability. They are wrong, no one will ever understand what you have to go through on a daily basis with a DWS child. Ella may have low symptoms as of right now, and we may have to watch her close over the next year. She could just have the fluid on her brain and no symptoms. Or over a course of the year she could develop problems that could require more help or even surgery. The disability she has is that she cant learn like a normal child. I can suggested if anyone wants more information to do research on it.
People can sit back and say its not that bad. To that I say be in our footsteps. Since Ella has been born, I have had at least 1 appointment to take her to. Last week we had 5 appointments. Every day, every two hours we work with Ella. Teaching her to hold her head up strong, by doing this it is going to help Ella strengthen her muscles. Ella has low muscle tone and she needs the extra help to allow her to do things like we do. We are also trying to teach her how to roll on her sides which we do this every 2 hours everyday. Ella is slowly learning from all the exercises but she still has a lot to go.
We know a lot of people dont understand and they dont know the meaning of DWS so they dont understand what we are going through. Please research it!!!! The more people that know, the more we can try and find a cure for this. DWS children deserve to have a normal life like us. and I will make sure our sweet Ella is able to be just like us.
Wednesday, September 19, 2012
Physical Therapy
Today we had a Physical Therapist come to the house to evaluate and to set up regular appointments for Ella.
The Therapist asked me a lot of questions about how Ella is doing, I let him know about her right hip being 50% under developed. He said that this is caused from DWS, that Ella has a small amount of low muscle tone. (Low muscle tone is caused by DWS)
The Therapist looked over Ella, and gave us some things to work on.
Home Program
1. Ella is doing well with her vision and movement. Try to encourage increased head control by playing with her in positions that
require her to lift and hold her head up. You can do this while she is playing on her tummy. Also try to hold her in a "football" hold to
make her support her head up to look around. Give her lots of visual stimulation with pictures and toys. This will also increase her
head control and strengthen her visual tracking skills.
2. Try tummy time each day for a total of 20-30 min/day. You can break this up into short bursts to keep her from getting too tired.
You can vary tummy time by placing her on your chest or use a small pillow under her chest.
3. Practice rolling with Ella by crossing her legs and allow her to roll her head and trunk in the same direction. You can do this right
after a diaper change so you are doing it 9-10 times a day. Be cautious with her right hip that you don't pull on he right leg.
4. Sitting is another good way to help develop trunk and head control. You can sit with her in the corner of the couch or in the
Bumbo chair with close supervision. Sitting will strengthen her back and neck muscles and give her more to visually look at.
I asked the Therapist what her future is looking like. Unfortunately there really is no way of knowing. The only thing we can do is work with her and teach her things. We will have a better way of knowing how her future will be when she reaches 1 years old.
So now till Ella is 3 years old they will come to the house and do therapy on her. When she reaches 3 years old she will be taken to Kauri Sue Hamilton School to be worked with. Than when she reaches 6 years old she may or may not have to stay at Kauri Sue, she may end up being able to go to a regular school.
I always feel so sad and hate the unknown, as I told this to the Therapist. He did say that he has worked on children with DWS around Ella's age that have been worse off. That she is doing great, and everything she is doing right now is great. So we will continue to do what we are doing and try to fight this!
The Therapist asked me a lot of questions about how Ella is doing, I let him know about her right hip being 50% under developed. He said that this is caused from DWS, that Ella has a small amount of low muscle tone. (Low muscle tone is caused by DWS)
The Therapist looked over Ella, and gave us some things to work on.
Home Program
1. Ella is doing well with her vision and movement. Try to encourage increased head control by playing with her in positions that
require her to lift and hold her head up. You can do this while she is playing on her tummy. Also try to hold her in a "football" hold to
make her support her head up to look around. Give her lots of visual stimulation with pictures and toys. This will also increase her
head control and strengthen her visual tracking skills.
2. Try tummy time each day for a total of 20-30 min/day. You can break this up into short bursts to keep her from getting too tired.
You can vary tummy time by placing her on your chest or use a small pillow under her chest.
3. Practice rolling with Ella by crossing her legs and allow her to roll her head and trunk in the same direction. You can do this right
after a diaper change so you are doing it 9-10 times a day. Be cautious with her right hip that you don't pull on he right leg.
4. Sitting is another good way to help develop trunk and head control. You can sit with her in the corner of the couch or in the
Bumbo chair with close supervision. Sitting will strengthen her back and neck muscles and give her more to visually look at.
I asked the Therapist what her future is looking like. Unfortunately there really is no way of knowing. The only thing we can do is work with her and teach her things. We will have a better way of knowing how her future will be when she reaches 1 years old.
So now till Ella is 3 years old they will come to the house and do therapy on her. When she reaches 3 years old she will be taken to Kauri Sue Hamilton School to be worked with. Than when she reaches 6 years old she may or may not have to stay at Kauri Sue, she may end up being able to go to a regular school.
I always feel so sad and hate the unknown, as I told this to the Therapist. He did say that he has worked on children with DWS around Ella's age that have been worse off. That she is doing great, and everything she is doing right now is great. So we will continue to do what we are doing and try to fight this!
Follow up call from pediatrician
I just received a call from the pediatrician, I told him the news from the neurosurgeon and he is so happy. He couldnt believe how great of news we received. He suggested coming next month to measure Ella's head and than after that in 2 months. He said we will keep watching her and make sure that everything is going to go great. I also let him know that we are starting early intervention today and he was very happy to know we are staying on top of things.
We are overwhelmed with the response of family and friends wanting to stay on top of Ella's progress. Thank you everyone that has asked to be added to this blog.
When Ella gets older and sees how many people have supported her over the years, I know she will be over joyed at the response. I have had some people ask if they can write something about Ella, to give her good thoughts, prayers and tell them how much they love her. So when she grows up and looks back at this blog she can see that everyone loved and cared so much about her well being.
You are welcome to comment below to her or even send me a note that I can post in upcoming posts or even save in her baby book for her to read when she grows up.
I do have to send a shout out to her Sister and Brother. They help me so much with taking care of her. Marian and Brayden love her so much and are always so concerned about her. Brayden holds her hand, helps with getting her blanket, binkie, bottle, and even a kiss on the cheek. Its amazing that my 21 month old knows so much and is so caring to his little sister. Marian has also helped out a lot with helping at her appointments, making bottles, watching her for a few mins so I can clean a little around the house. I have such great and caring kids, I am proud of them all. This isnt a easy thing for any of us to go through and having family and friends be by our side going through it makes us stronger. Thank you all for your support. I will be posting on her Physical Therapy later today!
We are overwhelmed with the response of family and friends wanting to stay on top of Ella's progress. Thank you everyone that has asked to be added to this blog.
When Ella gets older and sees how many people have supported her over the years, I know she will be over joyed at the response. I have had some people ask if they can write something about Ella, to give her good thoughts, prayers and tell them how much they love her. So when she grows up and looks back at this blog she can see that everyone loved and cared so much about her well being.
You are welcome to comment below to her or even send me a note that I can post in upcoming posts or even save in her baby book for her to read when she grows up.
I do have to send a shout out to her Sister and Brother. They help me so much with taking care of her. Marian and Brayden love her so much and are always so concerned about her. Brayden holds her hand, helps with getting her blanket, binkie, bottle, and even a kiss on the cheek. Its amazing that my 21 month old knows so much and is so caring to his little sister. Marian has also helped out a lot with helping at her appointments, making bottles, watching her for a few mins so I can clean a little around the house. I have such great and caring kids, I am proud of them all. This isnt a easy thing for any of us to go through and having family and friends be by our side going through it makes us stronger. Thank you all for your support. I will be posting on her Physical Therapy later today!
Tuesday, September 18, 2012
Second opinion with Dr Marion Walker
Today we had an appointment with a new doctor for a second opinion. We saw Dr. Marion Walker at Primary Children's, we have been told by Ella's pediatrician that Dr. Walker is the best neurosurgeon there.
I was going into this appointment with the mind set that if something bad is said to try and keep calm. I was becoming pretty anxious waiting for the doctor. I paced the room with Ella and finally he came in. He asked a lot of questions about Ella.
How is she eating?
How is she sleeping?
Is she learning to do the things she should as this age?
My response, She is right on schedule.
Shes alert, She sometimes makes oooo sounds, Smiles constantly, Holds my hand up to her chest as she sleeps, Always has to make sure where I am and that I havent left the room. She started kicking her toys in her bouncer, and lately she has been holding her head up pretty good by herself.
As far as eating. Shes doing pretty good about 3oz every 2 hours. Sleeping she is sleeping all night with only 1 or 2 feedings.
The doctor checked her head and said that everything feels normal, no bulging, her head is measuring small, no swelling.
He said that she doesnt have Hydrocephalus and really thinks that she would have had it by now.
Dr Walker said that when baby's are born with fluid on the back of the brain (DWS) and they are born with no symptoms, they may never have symptoms. He said he would like to see Ella in 6 months to reevaluate and at a year he will do a MRI and make sure that everything looks good. Until than he recommended taking Ella to her pediatrician to follow up every month and have her head measured, just to keep an eye on her.
This is very positive information, we are excited for what we have been told today. We know there is a small percentage that things could change. But at this very moment we are happy that things are looking up for Ella and she may be able to live a normal life.
I want to thank everyone for their love, support and prayers. All your love and positive remarks have given our daughter hope of a new life.
I was going into this appointment with the mind set that if something bad is said to try and keep calm. I was becoming pretty anxious waiting for the doctor. I paced the room with Ella and finally he came in. He asked a lot of questions about Ella.
How is she eating?
How is she sleeping?
Is she learning to do the things she should as this age?
My response, She is right on schedule.
Shes alert, She sometimes makes oooo sounds, Smiles constantly, Holds my hand up to her chest as she sleeps, Always has to make sure where I am and that I havent left the room. She started kicking her toys in her bouncer, and lately she has been holding her head up pretty good by herself.
As far as eating. Shes doing pretty good about 3oz every 2 hours. Sleeping she is sleeping all night with only 1 or 2 feedings.
The doctor checked her head and said that everything feels normal, no bulging, her head is measuring small, no swelling.
He said that she doesnt have Hydrocephalus and really thinks that she would have had it by now.
Dr Walker said that when baby's are born with fluid on the back of the brain (DWS) and they are born with no symptoms, they may never have symptoms. He said he would like to see Ella in 6 months to reevaluate and at a year he will do a MRI and make sure that everything looks good. Until than he recommended taking Ella to her pediatrician to follow up every month and have her head measured, just to keep an eye on her.
This is very positive information, we are excited for what we have been told today. We know there is a small percentage that things could change. But at this very moment we are happy that things are looking up for Ella and she may be able to live a normal life.
I want to thank everyone for their love, support and prayers. All your love and positive remarks have given our daughter hope of a new life.
Friday, September 14, 2012
3 months on Sept 22, 2012
Wow, I can not believe that Ella will be 3 months on the 22nd, time has sure gone by fast.
Little of things I have noticed in Ella in the past day. She has started to notice her voice a little more, it almost sounds like shes saying mum. I took the kids to Hobby Lobby earlier this week and when I looked down at Ella in her car seat. She was holding her toy in her hand, now I dont know how that happened because she hasnt done it since. But it does give me hope and thats all I need right now. Ella is now addicted to her mom and I dont mind at all. I have to show her that I am still here or she starts screaming. When we go for car rides she screams till she is back in my arms.When I have her in her bouncer she will get glued into the TV for a second, but than shes back on tracked trying to find mommy. Her eyes will follow me all over the room, she cries if I leave the room. As we are speaking she is in my lap while I write this blog. She loves her mommy! Today we contacted the doctor because her infection wont go away off of the 1- medication we chose. So we are going to try a new route and hope it helps. This one we give her once a day for 7 days, she has to actually swallow it for it to work, this medication runs through the blood stream and corrects the infection. if we dont see any improvement by Monday we have to contact them again and go from there till its gone.
Next week is our big week of appointments, Ella has 4 appointments.
Monday- appointment to get pictures taken.
Tues- Second opinion with neurologist at the Primary Childrens by the U.
Wed- Early Intervention Physical Theraphy
Thurs- Check hearing and Evaluate Ella for Early intervention
But we do have a exciting guest coming to stay with us, we are so excited. My bff Emily from years ago when we were younger is coming to visit from Cedar City. I cant wait to spend some time with her. Its been such a long time! The kids are all excited to see her to. Especially Marian. She has said how happy she is coming and that Emily is such a sweet girl.
I will post an update of what happened at the appointments at the end of the day.
For those of you that take the time to read this update on Ella. Thank you so very much, thank you for thinking of her and supporting her. We need all the support and love we can. If you are reading this blog please let me know. I would love to know who all keeps in touch, as I may put this to a private blog. Love you all!
Little of things I have noticed in Ella in the past day. She has started to notice her voice a little more, it almost sounds like shes saying mum. I took the kids to Hobby Lobby earlier this week and when I looked down at Ella in her car seat. She was holding her toy in her hand, now I dont know how that happened because she hasnt done it since. But it does give me hope and thats all I need right now. Ella is now addicted to her mom and I dont mind at all. I have to show her that I am still here or she starts screaming. When we go for car rides she screams till she is back in my arms.When I have her in her bouncer she will get glued into the TV for a second, but than shes back on tracked trying to find mommy. Her eyes will follow me all over the room, she cries if I leave the room. As we are speaking she is in my lap while I write this blog. She loves her mommy! Today we contacted the doctor because her infection wont go away off of the 1- medication we chose. So we are going to try a new route and hope it helps. This one we give her once a day for 7 days, she has to actually swallow it for it to work, this medication runs through the blood stream and corrects the infection. if we dont see any improvement by Monday we have to contact them again and go from there till its gone.
Next week is our big week of appointments, Ella has 4 appointments.
Monday- appointment to get pictures taken.
Tues- Second opinion with neurologist at the Primary Childrens by the U.
Wed- Early Intervention Physical Theraphy
Thurs- Check hearing and Evaluate Ella for Early intervention
But we do have a exciting guest coming to stay with us, we are so excited. My bff Emily from years ago when we were younger is coming to visit from Cedar City. I cant wait to spend some time with her. Its been such a long time! The kids are all excited to see her to. Especially Marian. She has said how happy she is coming and that Emily is such a sweet girl.
I will post an update of what happened at the appointments at the end of the day.
For those of you that take the time to read this update on Ella. Thank you so very much, thank you for thinking of her and supporting her. We need all the support and love we can. If you are reading this blog please let me know. I would love to know who all keeps in touch, as I may put this to a private blog. Love you all!
Wednesday, September 12, 2012
Staying strong
What a busy and hard Monday! Monday we went to the doctor in the morning and saw a on call doctor. Ella was diagnosed with Thrush. The doctor gave us three options.
1- Medication to be given 4 times a day till Thrush is gone.
2- Medication that will discolor her mouth
3- Medication that could potentially damage her liver
So no doubt about it, we went with option 1. We were instructed to give her 2ml, 1 ml in each cheek 4 times a day. We were not given any other information but this.
Ella's regular doctor called me today and asked how she was doing. Keep in mind I have never heard from a doctor himself. I have always been contacted from a nurse. I told the doctor that I havent really seen much of a response to the medication. He asked if I have been doing it after a bottle, of course I was doing it before a bottle to take the bad taste from the medication out of her mouth. We were not informed to give it to her after a bottle. So I feel stupid and now we are going to give it to her after her bottle.
Ella also had an ultrasound later Monday. The doctor said he read the results and they read that Ella's right hip was 50% immature. He gave me the orthopedic surgeons phone number and told me to get Ella into him asap. The soonest we could get Ella in is October 8th. The radiologist said that they will most likely put Ella in a brace that takes up almost the whole body, but the head and arms. He didnt mention how long she would have to be in this brace.
I feel really bad that she has to go through all these problems. I sit here and wonder if I might have played a role in her having so many problems. If I had done something wrong during pregnancy. I know not everything can be perfect and we all have flaws. But why my sweet daughter Ella, why does she have to suffer and go through so much. I start to think what if I didnt drink that pop or I ate better, would that have made a difference? During my pregnancy at 22 weeks, when we found out that Ella had DWS. I started crying wanting to know what I did and what I could have done to Ella to make her have DWS. The sweet doctor gave me a huge hug and told me that it was not my fault, he repeated over and over "This is not your fault, you did nothing wrong". This is caused by a bad chromosome. I look back at this moment and how hurt and confused I was. I use the strength Ella has and I use that myself. I look Ella in the eyes and she has no worries, no stresses and is just as happy as can be. She rolls with it! What a beautiful girl she is and how strong she is. She is my pride and joy! We will continue to fight our ways through this and we will make it out on the top. As Brayden says "Happy". We will continue to be happy and love each and every moment we have together.
My
1- Medication to be given 4 times a day till Thrush is gone.
2- Medication that will discolor her mouth
3- Medication that could potentially damage her liver
So no doubt about it, we went with option 1. We were instructed to give her 2ml, 1 ml in each cheek 4 times a day. We were not given any other information but this.
Ella's regular doctor called me today and asked how she was doing. Keep in mind I have never heard from a doctor himself. I have always been contacted from a nurse. I told the doctor that I havent really seen much of a response to the medication. He asked if I have been doing it after a bottle, of course I was doing it before a bottle to take the bad taste from the medication out of her mouth. We were not informed to give it to her after a bottle. So I feel stupid and now we are going to give it to her after her bottle.
Ella also had an ultrasound later Monday. The doctor said he read the results and they read that Ella's right hip was 50% immature. He gave me the orthopedic surgeons phone number and told me to get Ella into him asap. The soonest we could get Ella in is October 8th. The radiologist said that they will most likely put Ella in a brace that takes up almost the whole body, but the head and arms. He didnt mention how long she would have to be in this brace.
I feel really bad that she has to go through all these problems. I sit here and wonder if I might have played a role in her having so many problems. If I had done something wrong during pregnancy. I know not everything can be perfect and we all have flaws. But why my sweet daughter Ella, why does she have to suffer and go through so much. I start to think what if I didnt drink that pop or I ate better, would that have made a difference? During my pregnancy at 22 weeks, when we found out that Ella had DWS. I started crying wanting to know what I did and what I could have done to Ella to make her have DWS. The sweet doctor gave me a huge hug and told me that it was not my fault, he repeated over and over "This is not your fault, you did nothing wrong". This is caused by a bad chromosome. I look back at this moment and how hurt and confused I was. I use the strength Ella has and I use that myself. I look Ella in the eyes and she has no worries, no stresses and is just as happy as can be. She rolls with it! What a beautiful girl she is and how strong she is. She is my pride and joy! We will continue to fight our ways through this and we will make it out on the top. As Brayden says "Happy". We will continue to be happy and love each and every moment we have together.
My
Wednesday, September 5, 2012
Ella's Appointment
Well due to my emergency surgery we were unable to make it to Ella's appointment. So its been rescheduled for Sept 18th. She has been doing very well so far. We are continuing to monitor her and watch her grow. She is such a sweetheart, we love her so much!
Surgery
As you can see below, we have been quite busy over the last week. I was
almost done recovering from my c section with Ella. When doctors started
noticing that I wasn’t healing all the way from the surgery, I went in for an ultrasound
and a CT scan. The images showed that I had a 17cm large mass inside of me. I
went for a consultation on August 27th, I started hurting really bad in my
pelvic area, I had a hard time urinating. The doctor said that he would prefer
that we hold off and do an ultrasound in a month to see if mass has decreased
in size at all. I stated my opinion that I did not want to wait and wanted to
get it out of me. Dr became very nervous and had another doctor come in and go
over my history. This doctor said that he didn’t think it would hurt to go in
with a scope and look around and see what it was. We scheduled a scope surgery
that Wed the 30th.
We waited for about 2 hours to go into surgery. Meanwhile Matt had a deadline at work and had to get it done. So he worked as I sat there nervous. I had noticed over the last day that my stomach had swollen up quite a bit and that the pain was getting worse. As they took me to the surgery room I noted my concerns to the doctor. While I was in surgery, Dr Brown noticed that the large mass had grown 4cm since he saw me on Monday. It was 2 cm under my belly button on Monday and as of Wed it was 2 cm above my belly button. The Dr decided that it was not worth doing a scope that he wouldnt be able to do anything. He cut about a 4 inch incision up towards my belly button. While in surgery he found 2 litters of yellowish fluid in cyst and it measured 10 x 20cm. He was very concerned as to if it could have Cancer, so he sent it off to be checked. Cyst did come back non cancerest. I ended up spending 3 days in the hospital recovering as Matt stayed home with the kids. It was really hard only seeing my kids for a few hours during the day. But I knew I had to start recovering and get myself to where I could take care of them when I got home. Brayden was scared of the hospital bed and nervous about how bad I looked. He wouldn’t come near me in the hospital. The only time he would come by me is if we went for a walk in the hall and he helped me walk holding my hand. Marian was a big help and helped Matt take care of the kids while I wasn’t there. I was finally able to come home on Saturday Sept 1st; they removed my staples and said that recovery is 6 weeks, no lifting except for Ella. It’s been quite the challenge to get myself healed. When I got home I couldn’t walk on my own or hold Ella. On day 7 today I can now walk pretty well, I walk with Ella, but can only do it for a few minutes. I am still in some pain, but it’s getting better.
I talked to the nurse yesterday and she said the doctor and practice has never seen a cyst bigger than 9cm. That they were pretty concerned about the cyst that I had and couldn’t believe it. The doctor also commented that he should have listened to me when I said I wanted it taken out, instead of him saying to wait. He was glad I was determined to get it out.
I am so thankful for my husband, kids, Parents and Friends. When things go wrong, and you have friends show up at the hospital you know they are your true friends. Especially when they are there for you and more concerned about you than your own blood.
I had a lot of time to think about things and review my life while I was in the hospital and on the mend. Life doesn’t have 9 lives; you are only here for a short time. The time you are here should be spent caring and taking care of others. This is one of the hardest things I have been through in my life and I am so thankful for everyone that was so caring. I had a lot of friends and families send me there thoughts and prayers and I appreciate it so much. My BIG thank you is to my husband, kids, parents and my best and true friend Jennifer. You all helped me know that there are people out there that care and that would do anything for you. Wish everyone was like that and was there for their family. But we all are different and we all have our own opinions on how to care for someone or something. Make sure that you are there for family and friends!
We waited for about 2 hours to go into surgery. Meanwhile Matt had a deadline at work and had to get it done. So he worked as I sat there nervous. I had noticed over the last day that my stomach had swollen up quite a bit and that the pain was getting worse. As they took me to the surgery room I noted my concerns to the doctor. While I was in surgery, Dr Brown noticed that the large mass had grown 4cm since he saw me on Monday. It was 2 cm under my belly button on Monday and as of Wed it was 2 cm above my belly button. The Dr decided that it was not worth doing a scope that he wouldnt be able to do anything. He cut about a 4 inch incision up towards my belly button. While in surgery he found 2 litters of yellowish fluid in cyst and it measured 10 x 20cm. He was very concerned as to if it could have Cancer, so he sent it off to be checked. Cyst did come back non cancerest. I ended up spending 3 days in the hospital recovering as Matt stayed home with the kids. It was really hard only seeing my kids for a few hours during the day. But I knew I had to start recovering and get myself to where I could take care of them when I got home. Brayden was scared of the hospital bed and nervous about how bad I looked. He wouldn’t come near me in the hospital. The only time he would come by me is if we went for a walk in the hall and he helped me walk holding my hand. Marian was a big help and helped Matt take care of the kids while I wasn’t there. I was finally able to come home on Saturday Sept 1st; they removed my staples and said that recovery is 6 weeks, no lifting except for Ella. It’s been quite the challenge to get myself healed. When I got home I couldn’t walk on my own or hold Ella. On day 7 today I can now walk pretty well, I walk with Ella, but can only do it for a few minutes. I am still in some pain, but it’s getting better.
I talked to the nurse yesterday and she said the doctor and practice has never seen a cyst bigger than 9cm. That they were pretty concerned about the cyst that I had and couldn’t believe it. The doctor also commented that he should have listened to me when I said I wanted it taken out, instead of him saying to wait. He was glad I was determined to get it out.
I am so thankful for my husband, kids, Parents and Friends. When things go wrong, and you have friends show up at the hospital you know they are your true friends. Especially when they are there for you and more concerned about you than your own blood.
I had a lot of time to think about things and review my life while I was in the hospital and on the mend. Life doesn’t have 9 lives; you are only here for a short time. The time you are here should be spent caring and taking care of others. This is one of the hardest things I have been through in my life and I am so thankful for everyone that was so caring. I had a lot of friends and families send me there thoughts and prayers and I appreciate it so much. My BIG thank you is to my husband, kids, parents and my best and true friend Jennifer. You all helped me know that there are people out there that care and that would do anything for you. Wish everyone was like that and was there for their family. But we all are different and we all have our own opinions on how to care for someone or something. Make sure that you are there for family and friends!
Monday, August 27, 2012
Zoo 08/25/12
Ella started talking a little over the weekend also, she is now 9 weeks. Ella also started to take my hand and hold it up to her chest with her hands. She holds my hand so tight that I cant let go. Ella is also recognizing mirrors and toys. I put a mirror on her car seat and she looks at herself in it and smiles.
We had a great weekend, next week is Ella's neurosurgeon appointment. We are looking forward to some answers on the fluid in Ella's brain. We will update as we get answers. Thank you all that follow the progress of Ella. She is doing so great and I pray she continues to stay on target!
Thursday, August 23, 2012
2 Month Wellness Visit
Today was Ella's 2 month Wellness visit. Ella is now 8lbs 13oz 21 inches long, her head measures 15.6 inches in the 69% centile. A month ago her stats was 8lbs 2 oz , her head was 15.3 inches in the 68% centile. The doctor said she is very strong, shes holding her head up and she is very alert, shes right on schedule as far as milestones. Ella got 3 shots today and so far shes doing great, she is to the age now that she can have 1ml of tylenol.
More to come.....
More to come.....
Sunday, August 19, 2012
Another weekend
Tonight Sunday we are going to celebrate Ella's Dads birthday which is on August 21st and my fathers birthday which is the 27th of August. Let the fun begin!
Saturday, August 18, 2012
What is Dandy Walker Malformation?
Dandy-Walker malformation (DWM) is a brain malformation that occurs
during embryonic development of the cerebellum and 4th ventricle. The
cerebellum is the area of the brain that helps coordinate movement, and
is also involved with cognition and behavior. The 4th ventricle is a
space around the cerebellum that channels fluid from inside to around
the outside of the brain. DWM is characterized by underdevelopment
(small size and abnormal position) of the middle part of the cerebellum
known as the cerebellar vermis, cystic enlargement of the 4th ventricle
and enlargement of the base of the skull (posterior fossa). DWM is
sometimes (20-80%) associated with hydrocephalus, in which blockage of
the normal flow of spinal fluid leads to excessive amounts of fluid
accumulating in and around the brain. This leads to abnormally high
pressure within the skull and swelling of the head, and can lead to
neurological impairment.
Home page: http://www.dandy-walker.org
Home page: http://www.dandy-walker.org
Delivery
It
seems like it was yesterday that Matt and I walked down the long hall,
to the surgery room to deliver Ella. I looked in a mirror watching Ella
be born. It has been 2 months since she was brought into this world to
us lucky and grateful parents. Ella has been a joy to all of us and we
are so happy and grateful for her. We love you our sweet daughter!
8 weeks and update
As of right now.... Ella is very alert, shes staying away more during the day. She looks directly in to our eyes and smiles at us. I will talk to her and say Hello, are you going to smile for me pretty? She lights up and gives me the biggest smile with the cutest dimples. I decided that since she is so alert to put a hanging toy in her car seat for her to look at. The toy makes music and it helps so much with her being fussy in the car. I also attached a mirror to the car seat. She enjoys looking at it, a few days ago i even noticed her smiling at herself in the mirror. Ella has been trying really hard to roll over on her back. She accomplished the rolling over on her side a week ago. She is also starting to find her voice. I have been trying to get it on video, but by the time I get the video ready she has decided to stop. Ella has also started to suck on her hand. When I dont get her binkie to her fast enough, she puts her hand in a fist and puts it in her mouth. I have also noticed that she uses her arm to suck on too. Ella has started to hear a lot more. I notice that when shes asleep she has become a light sleeper. If she hears Brayden talk or scream or if Baxter our dog barks it wakes her up. She has even woke up to the voice of Matt talking. So we are working at lowering our voices and trying to make it a quite environment for her.
Update on her health. I received a call directly from Ellas Doctor. I am amazed at how sweet and caring her regular doctor is. He always makes the call, he never has a nurse or someone else make his calls. I have never had a doctor care so that much. He upped Ellas Zantac to see if maybe she just needed an increase of her medication to make her feel better. He also suggested to start doing things for colic in case she is also suffering from that. He suggested that during the day to try and keep things quite, curtins shut, and tv on low. He is wondering if shes getting too stimulated in the day and its making it hard for her to calm down in the evening. So we are going to try the higher strength of Zantac and try to do things in the day to make it not so loud for her. We go to the doctor on the 23rd to get a wellness visit and will review it than.
On Sept 4th we have our appointment with the neurosurgeon to get a second opinion on Ella. We feel that we didnt get enough information from the previous neurosurgeon. Hes one of those doctors that uses DR terms and doesnt explain it in people terms. So we didnt get very far with him. I am hoping this doctor can explain things better to us and make us understand Ellas condition.
I am going to keep this blog updated hopefully on a daily basis. I am hoping that as Ella grows that going back on the blog can help us in her future, and also to raise awareness of her disability.
Thank you for all of you that read, I appreciate all the support we receive from Family and Friends.
My parents in all have been very supportive as far as watching the children and helping when they can. I really appreciate them and their love for there grandchildren. Marian, Brayden and Ella enjoy their grandparents and their love to them. I know in my heart that my children will grow up like me knowing how much their grandparents loved them and how much they cared about them. Makes me miss my grandparents, I had so much fun with them. I miss those days of having sleepovers at their house and waking up to my grandpa making his fantastic Eggs and the smell of coffee. My grandma feeding their yellow bird and just the love they had for me. I miss you Grandma and Grandpa! I am happy I have the memories and I am able to share them with my kids as they grow up.
Subscribe to:
Posts (Atom)