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!

-------------------------------------------------------------

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.

Lazy Dayz

This is our second lazy weekend. Lazy in our world means no therapy. I hate the guilt that I feel for not doing tummy time or feeding time. It should be easy to just feed a child or put them on their stomach to play or push up, especially at 15 months but it's not. It takes work and persistance and some tears and time. In order to do it we have to plan feeding just right. She can't have just ate, she can't be thirsty, it has to be just right. Tummy time, well we should just do that anyway but I feel like she gets beat up enough during her one 30 minutes OT session and 45 minutes PT session once a week that I don't want to put her through it at home when we can just have an enjoyable time together. 

I know we need to do these things to help her not be so difficult during therapy. I swear though, I just want to hold down her therapists, blind fold them, and shove their hands out into the unknown and touch things they don't know. She cries from discomfort and frustration just about the whole time and it's starting to wear on this mommy. I just keep quite until her cries go from discomfort to meltdown and then I intervene. My other job there is to cheer her on when she does things that she doesn't normally do or like. Luckily feeding therapy is less tramatic, we try to prevent the crying there. And her sensory issues with things touching her mouth and going inside are doing much better! She'll let me get a spoon in there now but she doesn't exactly swallow. She'll just leave it in her mouth until she can't anymore and then either swallow or spit it out. But she doesn't throw a fit when her lips are touched with a spoon so that's progress.

For the mommies out there with kids with no issues. Be thankful when they roll over... it took a lot of work and 9 months before she did it for the first time. For the mommies out there with kids who lock their legs and try to stand at 5 months be thankful, Ellie still doesn't. I'm not bitter, or down, I'm thankful for every moment, for her licking her lips for the first time a month ago, for the first roll, and for the first twist to pick up a toy.

Tomorrow and the next day and every following day we'll do better... we have to. We want her to progress and that's going to take work. 

Resolution?

Well I talked to daycare and I felt like I got brushed off by the program director. BUT something has changed or clicked. She's been changed at daycare two days in a row and they are writing down her daily activites now. She was changed because she has a faucet of drool coming out of her mouth and it's soaking her shirt... to save on clothes we're going to have to get some bibs! I also randomly went into daycare this week. I told them I was going to do it but didnt' exactly tell them when. As for the daytime provider... I think we're on the same page and we understand eachother a little better. She doesn't have kids of her own which makes me nervous but my cousin and friends have worked at a daycare and they don't have kids of their own and they love the babies, so maybe that is a feeling that isn't valid and I just need to get over.

Ellie has a cough that has been going on for a few weeks now. Partly because of a runny nose, partly because she was sick a couple of weeks ago. Either way, I hope it goes away soon. Each cough is like a dagger in my heart. She was getting melatonin to help her sleep through the night but she'd still wake up at 2 or 3, so one night she didn't get it and slept through the night, she hasn't gotten it for a week and has been doing better at sleeping through the night. (Yes, melatonin is not exactly normal for children to get to help them sleep but when you can't see day or night you can get a little mixed up on sleeping times.) I think melatonin has jump-started her normal sleeping pattern, I just hope it continues.

She's still not eating food, but since she started feeding therapy her mouth is a little less sensative... baby steps right? And she has teeth! 4 on top, 4 on bottom and 2 coming in on the sides (random premolars). Anyway, it's time to hit the books before my deadline comes and goes. Have a great weekend!