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.