Future Appointments

Well the holidays are almost over and than we will be back to going to doctor appointments.
This Monday we will do our 3rd ear testing with Ella at Kauri Sue. I am going to try and make sure I feed her before we go in and hope I can keep her asleep. They are thinking she is failing the tests because shes awake and a wiggle worm. So if I can get her to not move hopefully this will be the last test.
We also have an appointment for Brayden this week with Kauri Sue. The Physical Therapist thought it would be a good idea to have Brayden checked also just to make sure he is growing and doing things on time. So Wed someone is going to come to our house to evaluate him and than we will be going into Kauri Sue to have his health evaluated. Brayden has always been ahead of schedule so we are not too worried. But its good to have him looked at just to make sure.

December appointments. This is where is going to get hard.

Ella is scheduled for a CT scan and neurosurgeon appointment on December 13th. This day we will look at Ella's current shunt and make sure its draining as its suppose to. We will also be looking at the fluid behind her brain to see if the shunt is taking some of the pressure off with the shunt. If the shunt is not helping the fluid on the back of the brain, they will schedule a surgery date to go in and put a second shunt on the back of her head.

Next Ella will go back to the heart doctor on December 14th. We will be doing another ECHO and seeing how things have progressed over the last month. The goal has been to get some weight on her, Dr Martin said that the more weight we get on her the better, she wont have to do open heart surgery and she will only have to block the artery with a spiral wire. If she does not gain the weight than we may have to look into open heart surgery and using a cork type of device to close the artery. If we end up in this situation it MAY cause other heart issues. Right now we are going to keep our schedule open the week of Christmas. So depending on DR Martin hopefully surgery after Christmas but before January. The only reason why we would want to get it done around those days is because both my parents are off of work and can help me out. Matt has no vacation time or sick time at work. So getting any time off is pretty much a NO. So with the help of my parents and Matts we will get through it.

Hard times have slowed down for a moment, but I know its going to be getting hard again very soon. I am just glad that we have supported Family and Friends to get us through all of this. The one that needs the most support, love and prayers is my precious miracle girl. Its amazing how strong she is and how fast she gets over things. Ella may be going through a rough patch right now, but we will get through this and she will grow up knowing what she fought when she was a baby.

I had to take this from my friends page because I believe it.

“So we fix our eyes not on what is seen, but on what is unseen, for what is seen is temporary, but what is unseen is eternal.” 2 Corinthians 4:18

Thanksgiving

This year we went to my parents first and had dinner. My parents make such a wonderful Thanksgiving dinner, I loved everything. The best part was sitting down with My parents and each of us going over what we are thankful for during dinner. Being asked that question I have hundreds of things I am thankful for, I cant just say one thing. But currently my highest thankful for would have to be my children, they are my heart and soul. Ella has been doing really good. I am so glad to see her doing things she would normally be doing at this age. She does have a slight delay, but with the help of Melinda our Physical Therapist we will work on things. Last night Ella discovered her tongue, its cute to watch her. She also started to put her binkie in her mouth all by herself with no help. If I am laying with her and playing on my cell phone, sometimes she will take it out of my hands to play with it. I think she is actually trying to get attention from me, mom stop what you are doing and look at me.
Anyway, back to Thanksgiving. After eating dinner at my parents and visiting for a bit, we headed over to Matts Parents. We had a second dinner with them, everything tasted great their too. Aunt Terri and our cousins brought us a big kitchen garbage bag full of clothes for Ella. We are sure thankful for the help with clothes, kids grow out of clothes so fast its hard to keep up. Our friend Natalie has been helping us also with clothes for Ella. We are so thankful for the help. While we were at Matts Parents Brayden was playing with his cousins and Marian, he loves being the center of attention. While he was playing with the toys their he came across a small toy toilet that belonged i a doll house of Marians. He would flush it and play with it, does this mean he may be interested in potty training? Hmmm we shall find out soon. Brayden has carried it around with him since Thanksgiving. Hope its a sign of get me out of these diapers so I can use a big boy toilet. After Matts parents we were so sleepy and drained that we went home and hung out. About 9:30pm Marian and I decided we would go to Walmart and find a few birthday presents for him. Thinking we were going to be fighting a BIG crowd of people, cars lined up across the street from Walmart and parking lot full. We came across a parking spot really close to the doors. We went inside and yes there was a lot of people, but it was almost as if we were going there on a Saturday. It wasnt bad at all. The only difference I saw in going on Thanksgiving was that instead of standing in line for 30 minutes on a regular day and only two lines open. All lines where opened and we didnt have to wait for anyone. We were in and out of walmart faster than we ever have been. We will have to remember that for next year. Next was going home and sleeping till 6am. Ella decided that she was going to stay up all night being fussy and not wanting to sleep. So I pretty much stayed up all night with her, got up at 6am. Marian and I went to Fashion Corner in Draper with our BFF Jamie. We were going for Boots and a jacket for me. First 100 customers got a free $10 gift card. We got there at 7:30am store opened at 8am, no lines at all no one was even standing outside. So Jamie suggested going to beans and brews real quick to get coffee. Now keep in mind when we left there was no line we could have been first in line. As we headed back to the store we noticed a lot of people outside. The line had started while we were gone, awesome enough it wasnt a 100 people. So we stood in line and waited for about 15 minutes. The longest wait ever, boots flashing in the back of my sleepy eyelids. Finally the line started to move. All three of us got our gift cards and headed in. We all kept losing one another, but in the end we all got in line to pay together. Marian got a really cute purse free with the Gift card she got and some sunglasses. The jackets went way to fast so I ended up not getting one but I was able to get 2 boots, one pair free with my GC. Jamie was able to get boots, shirt and I was so tired that I dont remember what else haha. We all had a great time, I cant wait to go next year! This

Matt stayed home with the kiddos and reported that Ella didnt do so good. But Brayden was great.

Till Next year!!!

Ella sleeping after surgery

Toys

Ella started a new thing today, if i put a rattle, Binky or toy in front of her she will take it out of my hands and play with it.

Monday 5th discharge

We were so excited to be able to take Ella home. Ella had a pretty good day and again that night she started getting really sick. Every time she would have a bottle she would have the runs and even vomited all over her and I. She was very fussy and we couldnt calm her down again.
I called and talked to a neurosurgeon that was on call it was about 6:30am. I felt like I was talking to a wall. He was half way asleep and didnt make since on what he wanted me to do. So instead I hung up and called the pediatrician, the doctor said that I should get her back up to Primary Childrens and be looked at. This stay ended up being a 3 night stay with no progress. No diagnose, no answers nothing. I felt like we were sleeping at the hospital as they the bill tallied up! The doctors didnt know what to do but send us home. So we are home and continuing to get better.

I met a few people along my experience that placed a strong strength in my heart. Its amazing in bad times like this who comes in your life. I was taking a much needed break and started to walk the kids down to a play area on the 3rd floor. A lady happened to get in the elevator with us and she happen to look over at me while I was trying so hard to keep strong. She asked if I was okay, and suddenly the tears started rolling. I told her about Ella and how worried I was about her. She came out and asked if we could talk some more. Come to find out she was the Chaplin in the church. We went in a room with one other  Chaplin and we said a prayer for Ella. I have never felt the stress, worry and anxiety lift off my body as we talked and prayed for Ella. It was an amazing feeling.

I believe that people come in our lives at good and bad times. Those bad times strengthens us up to keep moving. That night i had so much courage, I look back at that day and know that everything will be ok as long as i keep myself strong.

I want to personally thank my husband for giving me breaks, my parents for visiting and bringing us dinner, To everyone that called about Ella and prayed for her. Also thank you STG for the pretty flowers you sent Ella, they are beautiful.

Please continue the prayers as we continue to see how Ellas health goes. Your love and support means the world to us!

Hospital and Shunt placement

This is going to be a hard blog update on me, Bare with me.

November 1st 2012 Ella started screaming from about 10:30pm and continued on for the next day. Matt got up and walked around the room with her, I took her downstairs in the recliner, held her tight, changed her diaper, nothing helped. We decided that we would wait during the day to see how things progressed. Later that day we were still dealing with the screaming and I decided to call an on call doctor to see if we should go to the hospital. The doctor said that it was up to me as the parent. If I felt inside that this was not normal for Ella than I better take her. So Ella and I left around 7pm on November 2nd and headed up to Primary Children's in Salt Lake City. We arrived in the Emergency room, which is always a headache because all you do is wait around. But we finally saw a doctor and they suggested we get a CT scan done on her to check her Dandy Walker. (Screaming a lot can sometimes mean an infant is having pressure in the brain and its causing a headache) Ella did a great job in the CT scan, she was looking all over trying to figure it out.
About a 30 minutes later a neurosurgeon came in and talked to me. I didnt have a good feeling about this talk. She started to tell me that between the CT scan done a few months ago and the one today, that fluid had doubled the size in her brain. Ok so this is where I couldnt stay strong. She said that she will need to admit her to the hospital and do an emergency shunt at 8am November 3rd. I was pretty upset and it seemed like anytime someone would try to talk to me I would start crying.
Going back to when she saw the neurosurgeon the first time I was told she wouldn't be needing a shunt that she should be great, that sometimes children are born with fluid but never show signs or never need a shunt placed. What happened between that visit and this emergency visit is unknown to me. About 2 hours later they finally took us up to a room we shared with another mom and her child. I had requested for a big bed, so Ella and I could cuddle together. My heart was so hurt all night, all I could do is look at Ella and see that she had no clue what was going on and that she was ok. The next morning approached. A nurse came in and said its time for surgery, I carried Ella in my arms, 2 floors down and to the door of surgery. The nurse said I will take her now, she will be okay we promise. I gave her the biggest hug and kiss, as I wiped the tears from my eyes. I had them take a blanket that her Grandma Cowan made for her into surgery to comfort her and know I was there waiting. The doctor had said that the surgery would last about a hour. It had seemed like forever, I was pacing all around the waiting room, crying, praying, thinking of her. What seemed to be like 2 hours ended up only being a 15 minute surgery. The doctor came in talked to me and said everything went well and that I could head back and see my girl in 20 minutes.  Again me pacing the floors with a tissue next to my eye as I waited. I went back and saw my Ella, She was in a little baby crib, her eyes were open, but so confused as to what was going on. I could see a bandage on top of her head, one behind her ear and one on her belly. We went back up to the room, this time I wasn't able to hold her. But I was able to stay by her side and let her know I was there. Ella had a hard rest of the day and night. They had her on morphine, lortab and Tylenol to help with the pain. The next day we woke up and I couldn't believe it. Ella was smiling, kicking all happy. It had been a few days since I saw her happy face.
That morning the doctor came in to talk to me and said that  he felt that she would need a second shunt placed in the back of the brain. That the first shunt would help the top of the brain, but he was unsure about the back. So we were scheduled for surgery Monday. Monday came and the doctor had a ct scan and xray done on Ella at 7am. At 8 am he came up and said that he thinks she may need one, but wanted to hold off to see if the first one would help drain some of the fluid n the back of the brain. So he decided that we could be discharged and make an appointment to see him next month.

Bad Weekend

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.

PDA

Yesterday we had Ella's 4 month wellness visit. Doctor came across a heart murmur, he was very concerned and got us into an emergency visit with a heart doctor Dr. Martin at Primary Children's.
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

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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.  

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.

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!

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!

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.

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! 

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!

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.

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!

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

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 1^st; 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!

Long due update pictures