Monday, November 29, 2010

and, he's off!

Rhys is all over the place! He's down the halls, checking out the laundry room, sliding through the bathrooms, playing in his bedroom and most recently he's into the media cabinet.

The cabinet is new and he quickly discovered the doors slide open and he thinks the little niche is perfectly sized for him to crawl into. You can also see his handy work tearing up the foam mat. I've never had to worry about it before, but I guess it's time to baby proof the house!

Zoe is oh so close to wanting to move on all fours. She is leaning waaaay over to reach things while sitting and she slides her legs around and can almost tuck them underneath her. She is also fascinated with the couch and side of the crib so I don't think it will be much longer before she tries to figure out how to pull herself up. When on all fours she rocks back and forth like she's ready to go, but she doesn't really get on all fours yet unless I put her in that position. I can not believe she is already eight and a half months old!

Today I had my yearly checkup with the OB. I'd been putting it off for months for one reason or another and finally made myself go. The topic of the day was future pregnancies. I asked if he had any reason to believe subsequent pregnancies would progressively get worse. We all agree my pregnancy with Zoe went as well as we could have hoped for, but I still had random contractions from about 20 weeks on. My fear has been that my next pregnancy would become worse, and holy moly if I got pregnant after that it would be even worse still. My OB didn't think that was the case. He even thinks the next pregnancy would go better than Zoe's. Not sure why he thinks that though, guess I should have asked, but I can only assume it is because he now knows what my classical incision scar looks like and knows we were successful with the precautions we took with Zoe. He wants to do a hysteroscopy to check out the interior of my uterus though. He doesn't suspect anything, just thinks it is worth checking out.

Now, this doesn't mean we are going to have another baby right now, but God willing we will one of these days! Probably sooner rather than later. Actually, if I didn't have my issues I would do it right now in a heartbeat, but we have more to consider than just another bambino. To be honest, if the stork delivered babies I think I'd be in danger of wanting half a dozen. No joke. They are a lot of work, but are worth every minute of it. And even though people keep trying to tell me I'll change my mind once I have another, I think they are wrong because I just know.

Tuesday, November 23, 2010

news about Rhys's equipment

After much back and forth between me and the med supply company we've finally seen some action. I just gave up on the sales rep since we didn't have time to wait for her to decide to do her job. For the last week I've been working with the PT, high risk doctor, and med supply company to provide the necessary documentation to get Rhys's equipment ordered. If you haven't gone through this process before it is a royal! There has been a lot of confusion, a lot of duplicate document requests to the doctor and PT, as well as just plain ole' miscommunication.

I spoke with the doctor yesterday, trying to give her some direction as to what the paper work needed to say. Of course I have no idea, I'm just going based on what I understood from the med supply company. Never mind the sales rep should be doing this! So after that I'd had enough and called the sales rep's supervisor to get him in the loop. I left him a message, never heard back, but gave him the benefit of the doubt since it is a holiday week.

Today I called my contact to check on the status, only to find out he was on vacation and they were waiting on the MIA sales rep to fix some such something in the computer before they could proceed. I totally flipped out on the assistant! Ten minutes later I had a call from the supervisor. He was very apologetic, was a quick study and tied up loose ends for me today. We should now be ready to submit to insurance for pre-certification tomorrow. They've already verified benefits, but now they have to provide the necessary documentation for insurance to approve the purchase. Once that is done the equipment order will be expedited by the supervisor and we should get it prior to the end of the year. I'm glad we were able to get everything pushed through, but at the same time I find it ridiculous I had to hound so many people to get the job done. I believe the supervisor was embarrassed enough that he will do anything in his power to get this done by Dec 30, but I'll feel better once insurance grants approval and everything is ordered.

Friday, November 19, 2010

this and that

Lots going on in our household lately. Here's a recap.

Cody just returned from Africa after being gone three of the last four and a half months. Can you say single mother of two desperately needed some down time? Much thanks to all you who called in to check on us or offered help while Cody was gone. Coincidentally, Cody was in a different locale in Africa last summer for quite some time too.

Zoe is still not interested in crawling. She is sitting extremely well though and can keep her balance while leaning over to grab things so I'm hoping she soon starts exploring the world around her.

Rhys on the other hand has discovered that he can leave the confines of the living room rug. He quite frequently heads into the kitchen or down the hall into the bathroom or his bedroom. He's pretty quick for inching along.

Baby girl still loves to eat. Every time I give her food I have to remind myself that she isn't Rhys. I am continually amazed at how things are supposed to work.

Rhys's AFO shoes came in. I will get you a picture soon. Well, the shoes themselves look just like the picture I posted previously, but on his feet they look like cinder blocks. They fit well though and aren't terribly heavy. But, he still tends to scissor his legs when he steps and the shoes just compound that problem. I am hoping once we get the gait trainer in he will have better lucky with walking.

Which brings me to the equipment being ordered, or not being ordered as the case was. I am a very unhappy customer in regards to our "sales specialist". Perhaps she is a specialist in dragging her feet and not doing her job. I have called multiple times and left messages in the last eight days, but have received nary a call back. Unacceptable! I contacted the company myself, instead of waiting on her, to get the ball rolling. We need Rhys's equipment a.s.a.p. because (a) he just plain needs it, but (b) we need to have it processed through insurance before the end of the year. The company is working with us trying to get things moving, but it is taking several precious days to gather the information the sales rep already had but never submitted. She is going to have one serious compliant lodged when this is all said and done.

We are adding OT back to Rhys's therapy schedule. For some reason I had a brain freeze and agreed to remove OT from ECI services when the SP started. OT worked on both speech/eating and occupational therapy, so to avoid crossover of the eating/speech component she stopped coming. Duh! Anyway, she is starting up again and will be working on fine motor skills with Rhys. So this will make vision 2x a month, OT 2x a month, PT 4x a month, SP 4x a month. Oh, plus weekly swim. Rhys's little calendar is on power book these days.

We have been using calorie additives for Rhys for several weeks now. When he started moving around his weight plummeted. Well, that and he got sick so his appetite decreased as well. We've been using one powder and one liquid additive with great success. We aren't overly concerned about him packing on pounds, we just need to make sure he is getting enough calories to grow (i.e. height) properly. We are also having some success with Rhys eating some of Zoe's yummy homemade baby food. I'm trying to work towards introducing more food variety before I increase the texture as the SP wants to do. The SP is very pleased with Rhys's progress. He is starting to repeat some words and I swear he is acting like he is talking even though you can't understand him.

My entire household, save myself, is sick. Both kids and Cody are on antibiotics. Rhys's was just because he had drainage he couldn't get rid of. Poor Zoe ended up needing a breathing treatment, antibiotics and a steroid. She tested negative for RSV, which had my heart pounding just thinking of the possibility, and responded very quickly to the meds. Rhys received an Rx cough medicine right after Zoe was born, but this antibiotic was his first real prescription. Not too bad I guess considering he is nearly two and a half. Cody has been running fever for two days now. He tested negative for flu and strep. They are supposing it is viral but gave him an antibiotic for good measure. He thought he was funny today when he said "I hope I don't have malaria". Nice, babe.
Zoe is finally starting to weight shift. She just started that today. She's been standing very well for quite some time, but she stayed planted to the ground and never lifted so much as a pinky toe. Today she started picking up her feet. Hooray!

Thanksgiving is just around the corner and I can not believe it! I say that every month though... "I can not believe it is already (insert month here)". Thanksgiving last year marked my 20th week of pregnancy, where I started to mentally flip out.

We are trying to figure out what to get the kids for Christmas. As if they need a single thing. I believe we are going to get a play set for the backyard, probably after the first of the year. We have lots of lovely parks in our neighborhood, but it'd be nice to just open the back door. My cousin lives down the road and visits frequently, so with three kids between us this may be a nice little mommy treat to keep the kids occupied and give us a breather.

In addition to the equipment Rhys will be getting Cody and I purchased him a Special Tomato chair. This will give him another sitting option besides his seating system. It is also smaller and portable and can be attached to a regular chair. We've recognized Rhys's sitting problem for over a year and have bought many things to try to help him to no avail. But we never thought to look in medical supply. I am angry at myself for not knowing this stuff existed. I am also upset the PT didn't recommend something sooner. Rhys should have had a seating system a year ago. We love the PT, but someone let this slip.

Lastly, I am not liking how my days bleed one into the next with seemingly no purpose. Other than when the kids need things I have no schedule to speak of and it is driving me nuts! It seems to have gotten very bad lately. I am awake until all hours of night/morning and am tired of feeling like I'm running in circles. A fellow preemie friend asked if I was interested in volunteering at the NICU with her on the weekends. I am seriously thinking about it! It may be nice to have something that requires my time besides my lovely kiddos.

Friday, November 12, 2010

shoes and AFOs

AFOs are in! Rhys opted for the camo look. He's cool like that. We are slowly introducing them to his feet. There are many pressure points with AFOs and the goal is to avoid skin break down. So he is wearing them for a few hours a day, for maybe a week or so. He doesn't seen to mind them unless he is on the floor trying to move around. They aren't super heavy, but I would definitely describe them as bulky on the feet.

Next thing to address are new socks. It may not sound important, but I think Rhys needs seamless knee-high socks. With no ribbing. Think of the impression left on your skin when something is firmly pressed against it. The fold-over ribbed socks we've been putting on Rhys's feet are leaving marks after the AFOs are removed. It might not make a huge difference but we want to make it as comfortable as possible for him since he already has a rigid brace to contend with.

Which brings me to shoes. Rhys's foot is a bit wide to begin with. I've tried several shoe brands that typically work with AFOs, but they still don't fit well. So, I googled it and there are several manufacturers who make orthopedic shoes for children and adults with AFOs. Score! I picked these out.

And Grammy was kind enough to buy them for Rhys! They are designed to fit around an AFO, so are deeper and wider than traditional shoes. I'm super excited about them. Surprisingly, they weren't outrageously expensive as most medical equipment related things tend to be.

Last piece of learning to walk is the gait trainer. I still have not heard from our rep despite leaving her a message requesting a call back. It's getting ridiculous and she is about to incur the wrath of Candice!

Tuesday, November 9, 2010


First time EVER Rhys has held a bottle/cup by himself to drink. With no prompting whatsoever! He was so excited!! Of course my making a huge production of it could have had something to do with it.
I had to snap the picture really quick like before he figured out I was watching. That is normally when he does things, when no one is giving him the stare down. I need to find him a good, usable straw cup with handles. Preferably that is spill-proof. The only problem with any spill-proof cup is that it is sometimes hard for me to get the liquid out. And, Rhys only likes these certain straws. They are the ones that come in the honey bear cups. I actually like them too, because they are bendable and basically indestructible. I got Cody to buy a roll of ice-maker tubing at the hardware store for less than $5. It is the same material the honey bear straws are made of and I've been cutting away at it for months. I found these take-and-toss cups the other day and they are a perfect fit for the straw. They aren't spill-proof, but they at least have a lid. Anyway, if anyone has any ideas I'd appreciate it!

Sunday, November 7, 2010

equipment has been ordered!

Rhys's equipment has been officially ordered. I think. The gait trainer was supposedly ordered more than two weeks ago, but when the rep returned last week to help us choose Rhys's seating system it didn't sound as though that was the case. If you know me at all you know I hate this! Don't act like you're going to do something if you have no intentions of following through. I have made it abundantly clear that this needs to be taken care of a.s.a.p. because (a) Rhys needs it yesterday and (b) it needs to be filed on insurance before the end of this year, not next year. GRRR. Anyway, all the selections have been made so hopefully the remainder of 2010 will be sufficient for the 2-3 week lead time.

This is Rhys trying out a demo. We decided on this model actually. It is honestly a little scary looking if you ask me with all the attachments, but it has all the required features that will make Rhys sit properly.
The seat forces him to sit at 90 degrees by positioning his hips so he has to sit on top of them instead of leaning back. Not comfortable to sit ramrod straight but that is the point. It also will allow us to strap in his feet so he can't work to slide his rear out from beneath him. He loved the chair! I think he will enjoy being able to sit at the same height as everyone else. Plus the chair has a tray and can also be easily pushed up to a table. We go for his AFO fitting on Wednesday and I am anxious to get them as well. I really think they will make a difference for him.

And this is Zoe. Yes I know she is wearing boy clothes. We're recycling Rhys's PJs. But she has on pink socks!
Zoe is sitting very well. She occasionally loses her balance when she reaches for something, but when she does topple she doesn't fuss and quickly rights herself. She is not even a tiny bit interested in crawling. She rolls any where she wants to go and seems completely happy with that right now. I am trying and trying to get her to understand she could move on arms and legs but she is having none of it. She loves to bounce. More so while you're holding her than while in her bouncer I think. Oh, and she's decidedly moody once it's time for a nap or time for bed. I am talking the screaming comes out just like flipping a switch. I'm loving watching her personality develop.