Too long

It's been quite a while since last wrote in my blog. It feels like Ella passed away last night. The pain and feeling of that night never fades. Some days are worse than others. We stay strong in the outside but we are falling apart in the inside. The only thing that keeps me strong is my kids. I come home and they brighten my day. Sad thing is we have lost a lot of friends. The thing that they don't realize is that it causes us more pain and loss. So on top of losing our daughter, we have also lost close friends. I was told a few years ago by a friend that they cant be friends with me because they are worried that they could lose a child. Losing a child isn't contagious. Just because I'm a grieving parent doesn't mean you will lose yours. My daughter is the strongest i know. She fought hard to be here for two years. If doctors did the research and took care of my daughter, she would still be here today. The doctor that looked after her let her health fall in the cracks and to him. I'm ashamed at myself for believing and trusting him with my daughters life. He knows who he is and yes I let him know that he dropped the ball on my daughter. He will have to live with that the rest of his life. Just like I will have to live with not taking it further and beyond that doctor. My heart aches daily on what i could have done different to help my daughter be here longer. Is there anything I could have done to keep her here? Or was it really her time to be with god. No one will ever know for sure. But what i do know is she helped me learn so much and I'm so grateful that she's my daughter. I know she's proud of her brothers. I can see her in their eyes.
If there is one thing to learn from a grieving mother that has lost half her heart. It is that life is never the same after a loss of a child. It's like a bandaid you can cover the broken heart. But it never fully heals. Time passes and it feels like your heart is as broken as the day she passed. But you learn to go day by day and try to be strong. I may seem fine on the outside. But IM IN PAIN on the INSIDE.
If you know a grieving family be there, support them and don't run from them. They need you to be there for them. You don't have to say anything. Just be a friend and don't lose hope in the family.

With love,
Grieving mother

Another day.........

Today I write not because I want sympathy but because I want a listening ear. Life in the last two years has been very difficult a journey one could say. I never in a million years thought I would face losing a child. Everyday I ask my children how they are feeling, check on there breathing. You could say I have turned into a paranoid mom. When you face a trial like we have it makes you feel that at anytime something just as bad if not worse could happen.

Before Ella passed away I was content with life. I never thought anything could ever happen to my cute little family. We were perfect. Doctors would tell me before Ella was born that she would never be able to accomplish anything. I told myself from day one that she would show everyone that she could do everything. I pushed her and today as I sit here I think to myself maybe I was too on her to do things. When Ella passed away she could do everything we were told she wouldn't do. What a miracle she was. She taught our family so much. Her strength, her determination and her love for all that knew her.

When Ella passed away I scrambled for answers. I knew and still know till today that Dandy Walker alone couldnt have taken her. But the examiner that did Ella's autopsy said that it was Dandy Walker alone and nothing else could have taken her from us. Determined to find answers both Matt and I kept searching. I came across a post from the ceo of Dandy Walker Alliance. They had money donated to a research doctor at the Seattle Washington Children's Hospital. At first I was very nervous to contact him because I felt that it was just for children that were here on earth. But the more I talked to him I found that he was willing to help our family search for answers. I sent him Ella's autopsy and a few CT scans of her brain. We are still researching but he is pretty sure that the fluid in the back of her brain in her DW cyst filled up hitting her brain stem and that is what took her from us. Which raises concerns. I always trusted Ella's doctors, I put a lot of faith in them to take care of her. But this information actually tells me that her neurosurgeon that we trusted her life with dropped the ball. In November 2012 Ella was 4 months old. She went into emergency surgery having her first shunt placed on top of her head to drain the fluid in her ventricles. The next day we handed over Ella as they took her back to surgery to place another shunt in the back of her brain for the fluid in her cyst. Twenty minutes or so had passed and they brought her back to her room. The neurosurgeon mentioned to us that he had decided that she didnt need a shunt in the back that he felt the top shunt for the Hydrocephalus was clearing the fluid from the back too. Little did us parents know that the top shunt had nothing to do with the cyst fluid in the back and it actually wasnt helping at all. I feel like a fool. I trusted him to take care of our daughter and he failed us.

We know that information we receive now doesn't mean that Ella would still be alive today. She could have still passed away. But it does tell us that in the future to never trust just one doctor with our children's lives. To get second and even third opinions. Life is too precious to just trust one person you have never known to make things better. I imagine if Ella was still here, playing with her brothers and older sister. She would be so proud of all of them. I look at all of our children and I can see a little bit of Ella in each of them. She sure left her mark.

I will continue to do research and find answers. I will continue to fight for Ella..... I love you my sweet princess.

The nightmare.

Where do I start? Its been a long time since I last updated. Things haven't been easy without our little girl and sister. I never understood grief till we lost Ella. Grief is not something that just goes away. It can effect you for the rest of your life. I have been noticing lately that a lot of our support is on Facebook. But when it comes down to it there is only a selected few outside of facebook world that has been with us since she passed away. Going on.......

When I was a little girl I had this dream of growing up and raising a daughter. Doing her hair pretty and dressing her up. My dream came true only problem is that it came to a short end. The two years we had with Ella was spent a lot in the hospital. When we were not in the hospital it was spent doing things Ella loved. Her favorite thing was being outdoors. She would beg to go out. The night Ella passed is a night I will never forget. NO ONE saw what I saw. Being on the side of the road doing CPR on my two year old is not the way I would have wanted it to end. Ella stopped breathing in the car. I immediately stopped the car got out while I was dialing 911 and picked her up, took her to the sidewalk. Her eyes were wide open, and she wasn't breathing.. She wasn't breathing... I started CPR on my girl. I never in a million years thought I would be put in this position. After about 5 minutes of doing CPR (Which felt like eternity) A cop drove up and assisted me in doing the CPR till the firetruck arrived. As soon as the fire truck arrived they immediately took Ella from me in her lifeless body and took off down the road. The only words I remember at that time was hearing an officer asking me to sit down and listen to him. The only thing on my mind was is my daughter going to live? After a few minutes of being questioned the cop took me to the hospital. I was taken down a hall and into her room. They sat me in a chair next to her bed as there was many doctors and nurses working on Ella. She had tubes coming out of her mouth. Her clothes had been cut off her. As my parents arrived I hugged my mom and the only thing I could say is shes not going to make it, shes just not going to make it. The doctor came out and talked to me. He said that things were not looking good. But that if they could get a heart beat they could life flight her to a local children hospital. My husband showed up with our two boys in each hand. He went in with Ella for a few minutes came back out to me and said we need to pray. So we went into a hall held hands and prayed for God to not take her. As we returned the doctor came up to me and said we have a small heart beat and might be able to fly her out. He asked me to come in a feel it. As I went to put my finger on her skin to feel her heartbeat it had stopped. The doctors worked on Ella for a hour. They had reached as far as they could go. The doctor came out and explained that they had tried everything they could. But that her heart just didn't make it. My dream of having my little girl had been taken away from me. How was I going to explain this to my other children? The nurses let me hold my baby for 10 minutes when a chief with the police came in and said I needed to put her down. They had opened an investigation because I was doing CPR on the side of the road. That would be the last time I held Ella in my arms. How could she be gone. She had a great day with her sister and brothers. Painting, coloring and doing puzzles. What did I do wrong? An autopsy was preformed and the diagnoses was sudden infant dealth caused by Dandy Walker Malformation. Ella was 100% healthy except for her Dandy Walker. Her shunt was working properly. There is a lot I have left out but its things that I experienced that I wouldn't ever want anyone else to experience. This was the worst day of my life. For the last year I have had to try to explain to our older son why his sister never came home. His best friend. All of our hearts have a big hole in them. We may have to go on with life, but the grieving and the hurt will never go away.. NEVER. We miss you Ella more than anything in this world. 

The road we are traveling....

The road isn't getting easier in fact its getting harder. The more time that passes by that our sweet baby isn't here in our arms the harder things get for us. All we pray for everyday is for things to go back to the way they were. Life is not the same without her. Her beautiful smile and precious blue eyes having fun with her sister and brothers. Her coming up to daddy as he walked in the door after a long day at work wrapping her arms around him. Ella would wake up in the mornings with a big smile on her face, so happy to wake up next to us. It just doesn't seem possible that she is gone. Why would our beautiful girl be taken from us? She was so happy and content. She was so loved and cared for. The sadness of her being taken from us is never going to fade. We go about our days as if we are okay, but we are not okay. When we have to have connection with people they can see on the outside that we may be coping but they don't see the inside of us and how hurt we are. Our kids are starting to feel the loss of Ella a lot lately. Ella wouldn't want us to be this way, she would want us to think of her often and know that she is okay. We just don't know how to live without her by us. Come visit us in our dreams Ella, We need to know you are okay.

The end of the road.

Today I decided to sign into my blog. Its very hard to come back to this blog and see all the improvements of Ella. Than to look at right now and she is no longer in my arms. On June 27, 2014 I woke up and decided that it would be fun for the kids if I went to dollar tree and got some fun activities for them. I got them paints, Paper, Puzzles, Whistles. Ella had this beautiful smile all day. As the day went on she continued to be happy and content. She acted like her normal self. 7pm rolled on and I had noticed that she was becoming fuzzy. Not thinking anything of it I thought she was just sleepy. I rocked her back and forth in my arms walking outside in the backyard, than decided to walk to the front yard. As I took her outside she vomited all over. I thought to myself that maybe she just ate something bad. I took her upstairs and got in bed with her. She became very sleepy. She would sleep for about 10 minutes than she was back to being sick. Matt and I put her in the bath tub. She seemed fine just really sleepy. She nodded her head that she wanted to get out of the tub. So we got her out and had her get in bed with me again. After a little bit it seemed to me like her breathing was slowing down. I got really concerned and yelled at Matt to come look at her. We decided that I would take her to the hospital in case it was her shunt again. Matt placed her in the carseat and said daddy will see you in a little bit, I love you baby. We never knew that this would be the last time we would see her alive. I cant post everything that happened, but I do want to get out that I never thought I would lose my child. I always thought I would be taken long before. As I sit here today at day 17 I look back and try to see what I could have done differently to save her. Was my breathe while doing CPR not powerful enough? Did I do the CPR wrong? What did we do that day that might have taken her? Was it the gum in my purse? Did the paints that I got hurt her? I have a million things going in my head as to why she was taken from us too soon. I was told that Ella would be with us all our lives. I miss her hugs, her kisses and her holding my hand. My life will never be the same without her. I pray to her everyday at her grave that she will come tell me she is okay. But as of today I still don't know if she is okay. Today I have decided that I need alone time, today is my first day without anyone with me but the boys. I look around and wish she would just come climb on the couch with me and wrap her arm around my arm like she use to. Look up to me and smile with that big green binkey in her mouth. But than I snap back to reality and shes not here. Shes not smiling at me, shes not playing with Brayden. Shes gone. My heart is broken into a million pieces and its not like when you have a break up with your boyfriend. Its like my heart was ripped out of my body and I was left with a limp body. I just don't understand why she had to be taken from us, why do we need to be punished. If I had noticed the symptoms earlier could I have saved her? No one can answer this for me I know. But I will go the rest of my life wondering what I could have done different. Life is about trials and this is definitely the biggest trial of life I have ever and will go threw. I love you my sweet Ella! I miss you more than anything and wish I could have you back.

Much needed update

I havent updated since September. I cant believe its been that long. I had a friend say that she hasnt seen a update for a long time, it reminded me that I should update. So much has gone on since Sept. Ella has been having some episodes since August 2013. She has days were she vomits, pale face, off balance when walking, fussy and her veins in her face are prominent. We had been to the ER about 5 times since than, every time we went they would send us home saying it was a virus. This last time in Feb I tried telling the resident what was going on and he refused to listen to me, he talked over me. I asked for advice on a FB group called "Dandy Walker Parents" I had a sweet lady tell me that I should look back at the CT scans and see what they said. Lone and behold it said that Ella had slit like ventricles. I was so upset that immediately wrote a email to the doctor. He suggested getting Ella into him ASAP. That week we got her in he said that he thought that she might have a over drainage in her shunt. We decided that we would go into surgery and check things out. The next week we went into surgery, the doctor put in a drain that came out of her brain and drained into a sack. She was hooked up to this for 3 days. She could not move at all if she did I had to call the nurse to have it adjusted. It was pretty hard for her to sit in one spot. We than went into surgery again and placed a shunt on the other side of her head. It was the hardest thing I have ever had to face. I watched her be put to sleep and than wake up out of it. She was in so much pain. Seeing her like this broke my heart. Why her? Why does she have to go through this? Why cant we have a cure for hydrocephalus?  Ella is very strong and she always have a smile on her face no matter what she has to go through. We were released and sent home. A few days later I decided to look at the CT that was done after surgery come to find out she has a small hemorrhage on one of her ventricles. My question is why did they send her home if she has this? I called the doctor and they said it could go away on its own or it could bleed out. I am praying to Jesus that it will be stopped and she will be okay. Today she woke up off balance when walking, and fussy. I am really watching her hoping that she is okay. I feel really bad that Ella will always struggle with shunt problems. But she has a super support system and I know in my heart that she will be okay. We will work through it together.
I am going to try to be better about doing updates on Ella. I will write again soon. Here is a few pictures from our surgery visit.

Ella doing so good!

I havent been on in quite a while because I have had to go without a computer since April. So I thought since i was on Matt's laptop for a few minutes that i would do an update. Ella has done such a great job the past few months. The following are a few of the goals she has reached....

Army Crawling
Crawling up on couches, beds and such
Crawling up and down the stairs with little assistance
Saying dadda and momma and knowing what they mean.
Giving momma kisses
Converted over to whole milk
Standing up against the couch holding on to it with her hips only
Walking holding on to a stroller

Ella has done so much in the last few months. Now that she is 14 months we are trying our hardest to get her to walk on her own. Its been quite a struggle, but we know it will happen when she is ready.
Right now she is having physical therapy once a week. We are hoping with more therapy she will be able to walk before the baby comes. Yes BABY we are having a baby boy in December. Yep another child we will have 3 under 3 years old but we wouldnt have it any other way.

We had a 1 year old birthday party for Ella in June. We had face painting, snow cones and cake, she had such a fun time with all her friends. By the time everyone left she was found on the ground taking a much needed nap.

I will update as often as I can! Hope everyone is having a great summer!

Long overdue update

Our sweet Ella turned 1 years old on June 22nd 2013. Ella was born via C Section due to being breach. Ella was born at 8:16am and was immediately taken to NICU due to fluid in her lungs. Daddy was able to stay by her side from the moment she was born for the next 8 hours of life before mommy was able to see her. Ella was born with Dandy Walker Malformation, while she showed no signs of Dandy Walker at birth we were still nervous. For the next month 1/2 we waited till we could get into a neurosurgeon and have Ella evaluated. The appointment came and we were told that Ella was doing okay that the doctor was going to do his best to not have to put a shunt in her. At 4 months I had a really bad feeling Ella wouldnt stop crying for a day 1/2, so I rushed her to Primary Childrens to be evaluated. They did a CT scan and it was determined that she would need an emergency surgery to place a shunt in her brain. I stayed the night with her and walked her down to have surgery. I held it together the best way i could, I handed Ella to a nurse who took Ella to the surgery room as i was walked to the waiting room. I looked around in the waiting room and I was the only one waiting for my daughter the room was empty. After Ellas shunt was placed she was doing so much better for about 4 weeks and than her feeding went down and she started to breathe heavy and irregular. I took her to a heart surgeon and it was determined that she had a PDA heart murmur and would need to have a PDA device placed in her heart. December 17th we took Ella in and she went into surgery! Its amazing how much this little girl has gone through during her year of life. She has accomplished so many goals. As of now she is crawling, standing up against furniture and walking against furniture. We are so proud of her and all she has been through. She has so much strength in her to keep motivated and moving.
It amazes me that at just 22 weeks in my womb I was asked if I wanted to terminate and we said Hell no!!! I am very proud of our decision and i would havent have had it any other way. Shes our sweet pumpkin and she fills our hearts with so much joy.
We love you Ella and all that you are.. You are our Angel!!!!!!!

small update

I have been without a computer since April and havent had time to write in this blog. I decided to borrow my husbands work laptop and put in a small update.

Ella is doing so well... We had a 6 month review and she was 2 months behind in everything but motor skills and she was only 1 month behind on that. The PT said she is doing a great job and she is very happy with the results she has had. Ella is now crawling, standing up against furniture, walking against the furniture and even climbing the stairs.

Today we went to Primary Childrens and recorded Ella's life history till today at 11 months. This recording will be placed on Story Corps, Primary Childrens, and in the Washington DC Congress library. We will also be getting a copy of the story in 2-3 weeks that we can show Ella when she grows up.

We are very proud of Ella and all she has accomplished. She will be 1 year in 1 month, its hard to believe all the time that has passed. Shes our little sweet pumpkin!

9 months

Cold

Ella is slowly getting better. We so far have only had to visit the suction booth at the hospital 2 days out of 7. The first day they wanted to admit to the hospital, but we tried all we could to get liquids down her so we wouldn't be admitted. It wasnt easy and I thought for sure she would get admitted. But on Day 2 she ended up having wet diapers and able to get hydrated. The suction booth has a scale of 0, 1, 2, 3  with 0 being in great shape and 3 being in bad shape. Ella was placed as a 1 on both days. Meaning that her oxygen level is not great but well enough to keep her out of being admitted. Ellas small cold is a viral respiratory infection that an antibiotic wont help. So the shot of antibiotics she received will only help her ear infection. Which she hasn't shown any sign of them being infected still.  If she starts showing signs we will have to go get a second shot of antibiotic. We have missed so much PT, but as time goes by she is learning things on her own. She sat up for a few minutes yesterday for the first time all by herself with no help. So now she is semi crawling (scooting) and sitting up a little. Next month we are going to have a 6 month review with Kauri Sue to go over what goals she has met and what she hasnt. At the first of the 6 months I made goals that I would like to see Ella meet. We havent met some of them but for having an delay, having 2 surgeries shes doing very well and I know she will continue to amaze us. Keep your prayers out there I strongly believe that they are helping Ella. Love to all!

Long time

Its been a long few weeks Ella and Brayden has been really sick. So we have had to cancel all of the PT and dr appts. Brayden was diagnosed with Pneumonia  and Ella diagnosed with Respiratory infection, ear infection, dehydration, and sinus infection. We have taken her the last few days up to the hospital to have her nose suctioned out. Yesterday the nurse said we needed to have her admitted. We decided to wait 12 hours to see how she did. Amazing enough after 5 days of no drinking/eating and dry diapers she finally snapped out of it and decided to drink and have a wet diaper. She did great today at the suction booth in SLC Primary Childrens Hospital. We were told she was a 1 which means she is having a hard time breathing but not enough to admit her. She has been sitting next to me on the floor playing with toys... Of course she is still coughing but not as bad. Shes doing a lot better than she has in the last few weeks. I am so proud of her, hopefully we will be able to keep our appointments from her on and be able to get her back on track. Next month we have our 6 month review on her with PT. Which we havent been able to do for a while. She hasnt had a few good days to practice her crawling or anything. So hopefully she will continue to get better and start to be able to do things. Brayden was diagnosed with Pneumonia and bad asthma and has slowly gotten better too. Thank goodness we (Matt, Marian and I) have not caught this bad sickness. We will update as we can, hope everyone is doing better than us. Love to all!

Shes on her way

We have been trying really hard to get Ella to start crawling. Yesterday she did the most she has ever done. She is 8 months now and hopefully she will be crawling by 9 or 10 months. Which is fine with me as long as we meet the milestone.

She has started to taste a little bit of what we are eating, she loves our food over the baby food. I ordered a blender and I am going to blend up some of our food and see how she likes it.

update on her fall: Shes been doing great. We were a little nervous for the last week because she would blink her eyes a lot out of no where. But she has since stopped and is doing great.

We dont have much to update right now because we have had to cancel all our appointments for the last few weeks from Brayden, Ella and I catching a cold. But we are on the mend and hopefully will be able to get back to regular schedule soon. We are starting to go crazy having to stay home so much.

We are having Ella's PT and hearing test next week and will be updating on her progress. Love to all! 

March 2nd 2013

Saturday we woke up and decided to start cleaning and than had plans to go hang out as a family. As we were getting ready Marian and I had a miscommunication. I had thought she was watching Ella on our bed and She thought I was. I turned around for a second and heard a big boom. I turned around and Ella was laying on her back on the ground. She didn't move or make a sound was just looking around. I picked her up and she vomited all over, her eyes were going different directions and that is when I started to panic. I called the neurosurgeon and he said that she should be seen. I didn't know if I should call 911 or drive her to the hospital. Matt said get her to Jordan Valley since its the closest hospital and he would stay home and get Brayden ready and be over. As Marian and I was walking out to the car to leave Ella started to slowly drift off asleep. Marian helped me by making sure she was still breathing and trying to wake her up till we got to the hospital. The hospital was very concerned about her and did a CT Scan and Shunt series to make sure her shunt was okay and not broke. During all of this Ella slept. She woke up for the doctor for about 10 minutes and was back asleep. Everything came back okay on the shunt, but the doctor was still concerned because of Ella sleeping so much. So he called Primary Children's in SLC to see if we should life flight her or transport her to Primary's to be evaluated. Dr Walker one of the neurosurgeons was very concerned and asked for Ella to be transported by ambulance to Primary Children's. So I got into an ambulance with Ella and we went for a ride to Primary Children's. Ella cried the whole way, she was blowing big booger bubbles out of her mouth. So the EMT got out a suction machine and suctioned the boogers out of her mouth. By the time we got to Primary's Ella was so mad that she hit the EMT and was very upset with me. She calmed down as I picked her up out of the car-seat out of the ambulance. We than spent a few more hours at Primary's having Ella's CT Scan and Shunt Series looked over by doctors. Ella slept again the whole time we were there till we were about to be discharged. Ella was diagnosed with a bad con-cushion and we were told to watch her. The next day she seemed fine and than vomited two more times in a matter of 10 minutes.  After that she seemed to do pretty good the rest of the day. What we learned..... That we can not trust Ella to be left alone. She has become very strong and able to move, roll anywhere. I have beat myself up over this because I the mother that is very protective of my children let my daughter down. Thank goodness for the love, prayers and support we have. Ella is now back to herself and doing great!

Monday 25th 2013

The picture below tells it all....... Ella has now gained strength in her arms to hold herself up while on her tummy. Now all we need is to get her to put her knees up at the same time and she will be taking off. I dont see it being very long before she starts crawling! Go Ella.

We also were able to get some Dandy Walker Wristbands if anyone is interested in one or is interested in donating to the Dandy Walker Alliance to go towards a cure. We also received enough wristbands for our family of 5 for Hydro. Ella and I were wearing ours yesterday and I got this cute photo of us wearing them. She is pulling on them and by this picture I think it symbolizes that shes fighting these syndromes.

Ella is working so hard to do things that a child her age would normally be doing. Shes getting there, it will just take sometime. I always have random people say oh shes cute shes around 3 or 4 months right? I always feel really nervous and say no shes actually 8 months. They always say shes not crawling, I feel a little bit of anger in me which I hold it together and I say no she isnt she has a learning disability. Ella is just like all the other children out there it just takes her a little longer to learn things. I have had to come to terms that I am going to have people asking questions, but in the end all that matters is that my daughter is doing what she can and doing things at her pace. She is doing the best she can and thats all I can ask, I am grateful for her strength and courage, her willingness to keep trying. Shes such a sweetheart! Keep up the great work Ella you are doing great. Daddy and Mommy love you!

Next week!

This week has been a pretty mellow week so far. Ella has been feeling a lot better. We started take her to a new doctor and so far things are going well. We bought a boppy pillow last night from my friend Meg and have used it this morning. She has been doing quite well with it, she will sit up in it and when I put her on her belly over it she will extend her arms out to grab toys. She did get tired easily. But that will happen after having 2 major surgeries and trying to get her immune system strong again.
Next Monday we have an appointment to re test Ella's behavior hearing. She failed the last 2 tests. We are hoping since she is older and more alert that she will be able to pass it. I am pretty nervous, but know Ella will do just fine. We also have PT and I am hoping with getting the boppy pillow that by the time our appointment is that we will be able to show a lot more to the PT.
I want to thank everyone for there continued support. One of these days Ella will look back at this blog and know how much she was cared for and supported. Love you Ella! 

Physical Therapy 7 months.

Today we had physical therapy! Today I don't feel like crying, I actually feel pretty content about what happened during the appointment. Ella has started the following since last appointment 2 weeks ago. 

Ella is rolling all over side to side and to also get a hold of toys and such. She is drinking more formula every hour 3 to 4oz. Trying to sit up by herself and trying to attempt to crawl. Ella is putting her knees up, but needs to work on pushing herself up with her arms.

Goals for the next two week and ways to teach her to reach the goals.

1- Start stage 3 foods 

2-Prop Ella up on a rolled up blanket or towel under armpits to encourage extend arms while playing with toys. 

3-Help her go through sitting up motions on both sides as demostrated.

4-Continue with sitting time in high chair or swing.

We have also had some problems with Ella's pediatrician, so the PT gave us a few names to start with to try and get into. The pediatricians that she referred us to is doctors that specialize in working with special needs children.  

We talked a little bit about how I have been feeling with her not meeting goals as fast as others around us and the one question she pointed out that helped me is "Has these other children had any surgeries or special needs to stop them from meeting goals?"

That is a great question because Ella has been through so much in the 7 months of life. None of the children around her have had Brain or heart surgery like her or has any of the syndromes that she is fighting. So thinking of this and knowing that Ella is just a little behind has helped me today to be a little stronger.

ER VISIT

The last two days we have noticed that Ella has been very fussy and has been spitting up about a ounce of formula. Which is very similar to when we took her in to have a shunt placed in her brain. I talked to the neurosurgeon Dr. Brockmeyer and he said that he would rather be safe and get a CT scan done on Ella. The only way to do this was to go in to the ER and have it done. The Doctors appointments were scheduled out to far and anything that has to do with the shunt and possible infection needs to be addressed asap. So I took Marian and Brayden to my parents and headed to Primary Children's in SLC. The whole way to the hospital Ella screamed. She screamed all the way into the hospital till we got to the front desk and that is where her ALL smiles came in. Ella was no smiles yesterday and than when she reached the hospital she started smiling. I am really thinking she had me go to the hospital to smile at the nurses and doctors. We went through a series of shunt tests to make sure that the shunt was not broken or had any type of infection in it. All the tests came back and things actually looked better than the CT scan we had a month ago. Her fluid was slightly smaller in her brain than the CT scan before. The doctors said that she must have a viral gastritis infection. Which there is nothing they can do about, we have to sit and wait it out. The doctor did explain to me how shunt infections happen, any bacterial infection can cause a shunt to get infected. Winter is the worse season to get bacterial infections, so right now she is high risk with her shunt and her heart. While we can wash our hands and only go around healthy people. It not so easy to keep her away from it, Matt and Marian could bring a bug home from school or work. Or it could even be caught just going to the store or outside. So all we can do is watch Ella and pray that she never catches a infection.
On the funny side Ella tried the whole hospital stay to take her tag off her leg as pictured above. It was so funny, she tried so hard to get it off. The doctors and nurses thought she was quite funny.
Ella in the last week has also started being really cuddly with me. When I pick her up and hold her she will lay her head down on my shoulder, with her hands wrapped around me. She is such a sweetheart. I am so glad that this visit went better than I expected. Now its time for her to get past this virus and get better.

Physical Therapy

Yesterday we had Physical Therapy, it has been since the first of December since we have been able to meet with the therapist. The therapist brought along with her a student.
Things seemed a little more stressful as usual at this appointment, I am unsure if it was because there was a student there learning from the PT or what.
It started off by what has Ella accomplished since the first of December. Well its hard to be put on the spot especially when you have a 2 year old trying to steal the show.  But I tried to remember the best I could.... Ella has achieved the following......


1- Rolling on both directions from back to tummy, from tummy to back.
2- Batting, holding, shaking and pushing buttons on toys.
3- Takes her takes her socks off and plays with them.
4- Will hold weight when standing briefly.
5- Will pick up Binky play with it and place Binky in mouth.
6- 01/30/13 started to tuck knees under tummy in PT appointment.

To get Ella started in sitting up we are going to have her sitting in a high chair with towels on each side of her legs and let her play with her toys. We will also work on more tummy time to build her up to crawling.

I really had a hard time at this appointment, its always hard to hear that your child isn't up to speed and that she/WE need to try harder. So my cure for trying to shake it have a session of crying and then smile! Because all I can do is help Ella learn and be there for her.

No matter what is said to us I know with all my heart that Ella is doing the best she can, and that's all anyone can expect.

Keep on smiling!

I love this quote

"When life gives you a hundred reasons to cry, show life that you have a thousand reasons to smile"

Over the last day I have been putting a lot of thought into this quote. 
Back in October of 2012 I had plans with a friend I had for nearly 8 years. At the time that friend nor I knew what the next few months was going to end up like with Ella. As far as we knew everything was going to be running smoothly and Ella was just fine. The week of the plans Ella was having some symptoms which were very concerning to me. So I cancelled my plans with my friend to stay home and watch, take care of Ella. I received a message from this friend saying that it was uncalled for to cancel plans with her that she couldn't be my friend anymore. I looked back at the past 8 years and I had many of times that I would be home crying in tears because I was stood up by this so called friend. I thought to myself "she cant be friends with me, because I stayed home to take care of my daughter". The next 2 weeks became very hard with Ella, she became sicker. On November 2nd I rushed Ella to the emergency room at Primary Children's. The doctor confirmed that Ella was having pressure in her head caused by the fluid in her brain. Ella was admitted and had emergency surgery the next day. We were in the hospital for a total of 7 days, our luck continued and the next month she had an device placed into her heart for a PDA heart murmur. This was the hardest thing I had been put through in my life. My child was going through risky surgeries. I think back and know for a fact that this friend was not a true friend at all. If only she had known what Ella was going through and I as a mom. I had put money towards a foundation for her brother prior to this, because I was a caring friend and wanted to show her I cared. I put my heart out on his foundation page telling her how much I cared for her and her family and that even though I was having financial problems during that time that put money towards a great cause. I have been taught to forgive and forget. So for this quote I forgive this person and I will forget what they missed out on. Because Ella is a angel sent from heaven. We are grateful for all the love and support we have had during all the hard times we have been through and are grateful for all that helped us. I may have cried a few times over that friendship, but I have had more smiles than anything from it. Because I found out who my true friends are along the way of all of the hard times. 

Thank you for allowing me to find the person I am, how strong I am and how I can smile my way through all the hard times, and a little tear along with it.