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!

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.

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! 

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!

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.



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!

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

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!

Long due update pictures