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!

2011 Christmas Family Photos

Check out our family photos!

Dear God, I'm at work but I need you at daycare please

Let me start by saying, we are very thankful for the healthcare that we have gotten since moving here to Ohio. Work is a struggle for Dusty and I; he's learning a new portion of his job, and I'm getting back into the heart of mine for the first time in years.

Anyway, Ellie's daycare has her PT, OT, and feeding therapy. (That's right, she's getting feeding therapy! Onto that later...) Dropping her off the first day was incredibly scary, as with any child. She's still in the infant room since it's safer then the toddler room where kids are running around not paying attention. She had her adjustment drinking so she was getting DDAVP more than normal which interfered with her drinking and it was a vicious circle. After about a month and a half she got on a routine, and I grew to really appreciate the daytime care provider. I had my worries about the afternoon care provider.

With all of that said since her daytime care provider quit less than two weeks ago Ellie has come home with a wet shirt on two occasions, and Friday... well that’s why I’m praying. I’m praying for patience and understanding because I want to know WHY Ellie came home with her shirt smelling like puke, front AND back. I don’t have the patience not to go in there fuming. I forgot about it yesterday and honestly that’s best because my blood boils too hot when I think about it, and tonight before I started typing I had to have two glasses of wine (all I needed was an excuse).I’ll do my best to update quicker but until then I’ve got to sign off...

Please look below and see the link to our family photos. Yes, we’re cute/awesome/loving and any other adjective you can think of ;) And I know, they both look exactly like Dusty... damn those genes are strong, let’s hope my nose gene is stronger ;) just kidding, I don’t notice those things. (haha, although weight I do...)

Anyway, more to come later...

Ellie's 1st Birthday

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Getting Settled In

We're starting to settle in a little more and more everyday. Ellie is a hoot that's for sure. She's definitely developing her personality and it shows even more everyday. I'd say right about now it's more of a spoiled personality ;) She's been extra winey lately, but it could be a tooth. She won't let us feel in her mouth to see. The past couple of days we've had a hard time getting her to drink more than 2 oz at a time (and not taking more than an hour drinking the 2). We're really hoping that it's a fluke so we'll see. We got her enrolled into Tricare up here and then scheduled her a dr's appt for her 1 year follow up. At that appt I had a nice little "cheat sheet" explaining Ellie since birth with all of her medical issues which was helpful (and I'll keep up to date and pass out to who needs it). Apparently there are other children in the area with SOD/ONH too! I asked the pediatrician to hand out my info, I doubt she'll do it but as you all know, I'm serious!

We have her endocrinologist appt coming up and we're trying to get PT, OT, and a feeding therapist going as soon as possible. But #1 on our list now is finding some one watch her while we're at work. Luckily, Dusty has a little more time off work but it's not much and we're scrambling. Dusty called around and found a daycare in her therapy place so hopefully we're comfortable with taking her there otherwise we nervously have to leave her in the care of a nanny that we're looking online for. It will all work out right? Yeah, try reminding a mom who has to give her baby to someone new, it's terrifying!

O HI O

Hi all! I just wanted to do a quick update to let you know that we made it to Ohio! We got up here Wednesday of last week and we move into our house and get our shipment today! I'm excited to finally have a place to call our own again and I know everyone else feels the same way.

So far Ellie has done well with the traveling. I actually bought her a Scentsy Lamb that she started sleeping with before we left and while I'm not sure that it's helped her adjust or sleep it's brought me piece of mind that she has a few things that are just the same. We have also continued to use her night time Violet dog that plays lullabys. None of it has really helped her stay asleep through the night. We're running into the problem of her waking up at 2:30-3am. She doesn't cry but she does bang her legs/feet on the pack and play (and bed) until we get up. Dusty and i are hoping this stops when she gets back in her crib and a more solid routine...

Well it's time to get all the stuff out of our temporary lodging and take it over to the house. I'll probably have a better update this weekend since we don't get internet until Thursday.