Life at home

Wow, I know it's been awhile since I've posted but the past few months have been a transition that's for sure.

I am happy to announce that Ellie no longer goes to daycare and I stay home with her! This happened in mid-April and I think we're both very excited about the change. Since being home Ellie has started standing again and touching things more with her hands and allowing us to touch her hands! She is also talking more (and babbling mama!!) and has not been sick since leaving daycare! Her feeding is still not happening, but we have been able to make more appointments to dentists, opthomologists, second opinion therapies, and much more!

I'm very lucky to have a husband who supported this decision to leave active duty AF and cut our income in half. It was not an easy decision and to be honest it took us a year to get to this decision and see it through, but I think we're happier overall.

We have also started with with the Help Me Grow program and she's started to see a teacher for the visually impaired (TVI), we'll call her Ms. L. We really like her and enjoy what she brings to the table and she knows a lot about Ellie just based on her lack of vision. Ms. L is blind as well, although she has some vision it's so small but she is amazing at how she functions and works with Ellie. We went to see the new pediatric opthomologist, who is the first optho that I've felt confident in, and Ms. L came with us. We (the optho, Ms. L., Dusty, and I) believe that Ellie has some vision, but it is VERY minimal. Ms. L explained that she has to learn how to use it in order for it to be beneficial, which if you think about it makes a lot of sense, so Ms. L works on vision stimulation and vestibular (movement that Ellie craves since she's missing vision which compensates some for the movement).

I may have complained about her PT and OT before but they are really helping her and we're seeing good progress from Ellie. I got second opinions done, and for as much as I like the other PT, Dusty and I decided that right now changing her PT may not be the best idea. Her current PT has invested a lot with Ellie and vice versa.

I'll close this entry with some videos but I first want to make you all aware we are looking into going to China for stem cell treatment. We have done a lot of research, talked to families who have seen vision improvement and those who saw none and decided that the benefits outweigh the costs. So, stay tuned for updates on that too!

Spread the word to end the word.

I pledge and support the elimination of the derogatory use of the r-word from everyday speech and promote the acceptance and inclusion of people with intellectual disabilities.
Do you? Will you? Spread the word to end the word

There are so many blogs out there with explainations on why you shouldn't use the word, how it makes us parents of children who have fallen behind feel, but I'm sure those things aren't hard to figure out. But just to put it in perspective: I remember when the doctor told us Ellie had Septo Optic Dysplasia. "It could mean that she could have no vision, from completely blind, to having no vision problems....(as if in slow motion)... and she could be developmentally delayed, from no problems to severely retarded." As I told him to wait so I could get my notebook to start writing down what he was saying, because lets be honest these are major blows and I need to remember this, "Retarded" echoed in my head. The thought of some one, some child, some adult, calling my baby, my daughter, my life retarded was... well there are no words to describe how it felt. It's taken me a while to get to this point where the R word is unacceptable because now I see the delays and now I see how far behind she is. Before you use the word try to imagine how it feels for someone to call someone you love more than life such a word instead of using stupid, loser, weirdo, or whatever the implied meaning was meant to be.

Resources

I got an email from the Ohio State School for the Blind and it included this website with a nice Shopping List. I need to pick and choose.

Annoyed Mom of a Blind Kid

I try to keep this blog positive and happy. I try to see the silver lining in all that we have been dealt but I'm feeling a little more annoyed lately than normal.

You see we moved here to get better services for Ellie. By services I mean medical and theraputic and we have better medical services now, but theraputic is lacking terribly! I'm so sick of going and seeing the same therapists every week who haven't worked with a blind infant before. They've gotten better and Ellie has progressed more (after my long email pointing them to new therapy methods) but I feel like there is some one or some place that can get us further than we are now. I'm tired and pissed that I'm always tracking down the next place for us to go or person to see. Why in the hell don't the therapists or doctors or nurses point us in the right direction?!? They get paid for this! Why am I constantly asking for adaptive equipment and not getting responses?

And most of all, WHY ARE WE HERE?!?!? WHY ISN'T ANY PERSON ON OUR HEALTH TEAM HELPING? Sure, they answer questions but why did I track down a feeding clinic in Cincinnati? Why didn't Endo, the pediatrician, the feeding therapist, or occupation therapist mention this to me before!?!?

And if someone could PLEASE tell me what a developmental specialist does I would appreciate it. We've had 2 and we have a referral to a new one and I can't bring myself to make an appt when the previous two had me so confused on their purpose and I felt as though it was a waste of time!

I feel like I'm going in circles and I already don't have enough hours in the day with work (that's a whole new bag of aggravation) so when am I supposed to call and get Ellie into the Help Me Grow program again? When do I have time to focus on all of these referrals, appointments, and new methods? I don't, this is what our "team" gets paid to do so why aren't they doing it?!?

Videos

Starting the year off right!

Over the holidays we got to spend extra time with the lil miss which was absolutely GREAT! She liked it too because when I did have to take her back to daycare she cried when I gave her to the provider. (Hurts my heart but it’s good to know she’s going to miss us too.) Anyway, extra time with her meant extra activities and in-home therapy sessions with mommy and daddy. She got to relax and lounge with us and then we played (therapy activities) too. Man, what a great time!... Anyway...

She’s starting to get bursts of energy, I can imagine that these little spazes (that’s what I like to call them) would normally result in a toddler running around or being rambunctious, but she has mobility limitations so she just tenses up and screams with excitement.* We’re engaging her more at home so I can really tell a difference in how she’s acting and exploring more and doing more things and so last night this little girl pushed up on her legs supporting all of her weight by herself! Super proud but thought it was one of those things like the first time she rolled over... she rolled but didn’t know what she did; it took her another 3-4 or months to do it again. Well tonight when Dusty was working with her not only did she stand ALL BY HERSELF! (with daddy behind her) she did it multiple times and at one point it lasted about 10 seconds.

There’s woman “the mom” from Uncommon Sense Blog who basically explained this time is when hope moves to reality. That we are moving from hoping that she’ll stand to knowing that she will one day and it’s not too far off. We hoped that she would stand and walk but quite frankly, I was preparing myself for wheel chairs.

Then, just when I thought I just witnessed the best thing of my day, week, and possibly month Dusty came up with an idea to try whip cream when feeding her.** So, he tried the whip cream and what an excellent idea! It has texture, solid without being too thick to make her sick, and she should gag that bad because it will water down quickly. She did GREAT! It was awesome and amazing and was eating it up! She didn’t gag or fuss! She ate a lot and did great.

Proud doesn’t even cover tonight!

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As for daycare and therapy... well I sent the therapists and email with alternate therapy methods and told them hand-over-hand isn't effective and it's time to try something else.... and daycare, well it's time for me to get out of the military. We talked and made a list and decided it's time for Ellie. It's scary to 1/2 our income but it's Ellie, she's need people who know her needs. Now it's just a matter of finding a reserve position open for me (I don't want to completely throw away 10 years in the military).

*Yes it’s really excitement; she’s not over stimulated or any of that stuff.

** Yeah, I know what you’re thinking, “But you’ve got to be worried about her teeth and you’re giving her sugar?” The answer is yes and we will continue because if we don’t move past the feeding issue then she’ll have teeth for no reason that will rot out anyway.

New Year Resolutions

This is Ellie's blog, but she's not old enough to type or write, or even talk yet so I'll tell you my new year resolutions.

1) Not to accept anything less then the best. This goes for Ellie's medical care, her daycare, her therapists, her clothes and toys. This is the least I can do for her. She has been through more in her life then she deserves, as have most special needs kids, so that is what I can do for her.

2) To do the best I can. I work full time and take a full load of classes and take care of the house (ok so that's mutual between me and the husband but still). Dusty and I have a lot going on in our lives, we have our own wants and desires and we have ones that we want and desire for Ellie. She take precedence but that doesn't mean that we won't take time for ourselves. We will do the best that we can for her and ourselves. (Luckily I have a husband who makes me take time for myself! We're good for each other like that.)

3) To make progress. Heck yes I want her to eat, even baby food. I want her to stand and talk and walk and twist and turn like she's supposed to. BUT that may or may not happen in the next year, who knows! What I do know is that she will make progress, little by little she will do something better today then she did yesterday and that's all we can expect and ask for.

4) To learn! We will go to the The MAGIC Foundation's Convention in July again. It's great to be around people who understand or know about your daily struggles as a parent of a child like Ellie. It's also educational, even if we learn just one thing new, it's completely worth it! And just like not settling for anything less then the best we will be on par with the doc's and their terminology. In order to get the best care it's nice to have two people speaking the same language.

5) VIDEO'S! I bought a small and easy video camera last year for the convention and thought, sure I'll use it again... well I just got it out of storage. I also bought a small (and portable) tripod to get better videos.

Here are some new and old videos from the video camera for you to enjoy.