Bad Blogger, Very Bad Blogger

So, we've been a little busy. We've been having fun! Between dinner parties and birthday parties, there hasn't been enough time in the day to update Maryam's blog...BAD MOMMY! Last week we had the Carnes over for dinner and Guitar Hero Aerosmith Edition. The McClouds came over too to play some Guitar Hero, then beat Daddy at Halo....Maryam mostly just walked in front of the TV and messed us up! But that's what babies do with video game systems!

Here is Ian and Anna playing in Maryam's kitchen, while Maryam sat on Mayda's lap for some story time.

Here are Christy and Me....We really should have had someone else take the picture, huh?

Maryam and Anna playing with Mayda so we could continue playing Guitar Hero. Anna and Maryam play great together! Its so nice. Christy, Mayda and I grew up together, now our kids will be able to do the same. Thanks for moving back to CA Carnes Family!
This same day Maryam had PT. She saw Peggy, who LOVES watching Maryam play. The therapy office has this huge pediatric gym where Maryam has free reign to do what she wants in and she does! First she was walking on mats, which was hysterical because each mat has a different density, so she had a hard time keeping her balance and couldn't figure out why! Eventually she was able to get on and off and transition between the mats without falling. Yeah! Then she moved on to the ball pit. We showed her how to get in and out properly so that she could learn to do it independently. Once she got into the pit, she wanted to throw all the balls out. So, we helped her out of the pit and showed her that she's supposed to put the balls back inside. Once she got all the balls back inside, she wanted to go back in the pit to throw them out again. This would have went on for hours if we let her! One of her trips out of the ball pit she fell and smacked her head on the tile floor. I thought she had figured out how to get out properly by herself. She started doing it right, then at the last minute she turned her whole body around and instead of going feet first, she took a header. She cried and we called it quits.
We did notice that Maryam has learned to pivot to turn. So, she's not taking those really wide turns that requires an entire room to change directions. And her stance has narrowed tremendously both when she stands still and when she walks. Also, her arms have come down quite a bit. She was walking with her hands up over her head, now they're more down by her side and she's able to carry much bigger and much heavier items around without falling as much.

Talk about your bad day!!!!

Bad, frustrating day! I haven't had one of these in a REALLY long time, so I guess I'm due. It all started with a trip to Physical Therapy. Maryam's therapist told me that she sees signs and symptoms of Cerebral Palsy in Maryam. She said that she's not diagnosing that she just wants me to be aware. She also told me that when I first brought Maryam in that she really thought it at the time, but since Maryam responded so well to therapy and is catching on so quickly that she no longer thinks its as severe as she once thought. Hopefully the longer Maryam is in therapy, the more she'll learn to use her muscles properly and all the signs and symptoms the therapist sees will just go away. Here's to hoping and praying.
Then the real drama starts. I got a phone call from Apria (the company that delivers Maryam's oxygen) and the really nice man on the other line asks me what would be a good time tomorrow to come pick up all of the oxygen and equipment. Excuse me, what? He proceeds to tell me that Kaiser says they're not covering it anymore because we're "out of area." Whatever that means! He gives me the number to customer service, gives me the customer service manager's name and phone number and I proceed to call her. I get her voice mail, of course. After that I decided to call DME (durable medical equipment) because they're the people that order the oxygen through Apria. DME is who sends us Maryam's formula, syringes, feeding pump bags, nasal cannulas, tape, bandages, tubes, buttons you get the point. I proceeded to tell Maria (She was kind of mean) what the Apria guy told me. She then tells me that Kaiser says that we're "out of area" and I don't have "out of area coverage" so they can no longer send us any of her equipment anymore.
I then explain to her that I made all of the arrangements for the transfer from San Diego to Fontana back in August and up until we had no problems getting any of her equipment, oxygen or other wise. She tells me she's going to check the records and puts me on hold. She comes back 10 minutes later only to tell me that they had erred on their side and that they shouldn't have been sending her any of the equipment all this time! So, then I explain how before we moved here I had called Kaiser to verify that we would have coverage here, that member services told me that our DME would come from Fontana, we could use Rite Aid in town, that we'd get oxygen from Apria in Palm Desert and they even gave me a list of docs that would take Kaiser coverage in town and Yucca Valley.
She puts me on hold again for another 15 minutes. She comes back to tell me that her supervisor is going to do some research and call me back in a half hour. Well, a half hour turns into an hour and a half! GREAT! In the mean time I tried calling member services only to get a recording that says 'they're too busy to call back later.' Not a please hold for the next available agent, not leave a message, but CALL BACK! OMG!
FINALLY an hour and a half later Maria calls me back only to tell me that her supervisor is researching the issue and will call me tomorrow. I take that as code for "this is taking longer than we thought, its time for us to go home, we'll start again tomorrow and call you back when we get a chance."
By this time I'm livid and I have to feed Maryam, which is taxing in itself. I decided to delegate. I had Brett try calling member services to see if they can tell us why Apria is telling me that Kaiser isn't paying for oxygen and why DME is telling us that they're not sending us anymore supplies. I gave Brett and list of questions to ask, a list of points to make, the phone number and tell him to let me know what they say. He calls me back and tells me that Kaiser says they're still paying for the oxygen because its covered under our plan (damn right! At $548/month it better still be covered) and that DME in Fontana is wrong, they are the ones who cover 29 Palms and yes all of Maryam's supplies are still being covered by Kaiser as well. She also said that she thinks there is some sort of glitch in the communication between Kaiser and Apria or that the prescription for the oxygen went to the wrong Apria office. She said that could possibly be the reason they think we're out of area. BUT, by then it was too late to talk to anyone at Apria who counts, and DME was closed. She left messages with managers at both and is going to call Brett back tomorrow after all is sorted out.
Talk about unnecessary stress! Well, I'm still going to stress about it until I hear from Apria that they're not coming for the oxygen and I don't have to pay for it if we keep it. I have NO idea how much oxygen costs! And until I hear from DME in Fontana that they're going to continue sending Maryam her medical supplies.
Its been a long day. Maryam had OT in Palm Springs at 10am then PT in 29 at 12:45 and then I spent the rest of the day on the phone. I had bouts of anger, sadness, frustration and exhaustion. Needless to say I can't wait until midnight. It will be nice to start a new day.

Playing catch-up

Stupid Questions/Comments
So, Sarah and I went shopping in down town Temecula last weekend, we went specifically to go to a scrapbook store that we know has REALLY cute and girlie zoo paper. When we walked in to the store, what was the store owner's first question? NOT, how can I help you? NOT, can I help you find something? NOT, is there something specific that you're looking for? But, What's wrong with your baby? I was holding her at the time, I looked down at her to see if she was blue or suddenly unconscious to find her looking perfectly normal! So I said, nothing, why? Then it occured to me, "Ooooh, the oxygen? She was born 15 weeks too early and her lungs aren't quite developed yet." Then to my FAVORITE QUESTION OF ALL TIME...How long is she going to have that? "UM, until she doesn't need it anymore!" DUH! At that point, Sarah's reaction was, let's get the "f" out of here and I should have agreed, but I continued shopping. Giving her the benefit of the doubt.
Next...the washing machine repair guy comes to the door. I open it, he says he's there to FINALLY fix the machine and I invite him in. I no sooner close the door when I hear...."Wow! A baby on oxygen, that's got to be upsetting." My response, "not as upsetting as it was when she was on total life support for almost 2 months. Or laying in the NICU for 5 months. She's come a LOOOOONG way and the only thing that upsets me about her being on oxygen is when people say things like that. The washer is through this door." Hooray for me! I FINALLY did it! I managed to actually say what I was thinking. I'm sorry if I hurt his feelings, but those types of comments hurt mine. I know they shouldn't because I should be use to it by now or at the very least give these people the benefit of the doubt that they've never seen a baby on oxygen before. But sometimes it REALLY hurts my feelings. It makes me long for winter again, where I have an excuse to just stay inside.
Feeding Clinic News
So, Kaiser denied our request to go to an intensive feeding clinic. They claimed we have not exhausted all of our options and/or their services. OK, never mind we've been in OT since mid last year, they want us to see their OT. So, now Maryam is going to be in PT twice a week, OT with Amanda twice a week, OT with Kaiser's OT twice a week and still have EI once a week. And gas isn't getting any cheaper! Of course this new OT is in Palm Desert. Even further away than her first OT. Lucky us! The benefits will be seeing what a new OT thinks of Maryam's oral problems, getting more therapy (it can't hurt) AND this OT doesn't technically work for Kaiser, so she said she'd have NO PROBLEM referring Maryam to the feeding clinic if she doesn't think she can help in a timely manner! HOORAY! Today is our first double OT day. Her first apt is with Amanda and then with the new OT after that. Wish us luck!
Maryam
We have a cruiser. Well, she's trying anyway. Yesterday she cruised all the way around the ottoman to get to Auntie Sarah's Coke only to be rejected once she got there. Of course I gave her a cup with water, but she REALLY wanted Sarah's red Del Taco cup. As most of you know, Maryam can't drink carbonated beverages because of her stomach surgery. Now, how do I explain that to a 17 month old? LOL
Maryam is continuing to try new foods. By try them, I mean that she tastes them and then spits them out. She is drinking a lot more though! Oh and she did eat my ice cream off a spoon. She actually let me put the spoon into her mouth, she took the ice cream off of the spoon and then swallowed! It was awesome! She hasn't done it since, darn it.
Blog updates
Blog updates are going to become more scarce. Our laptop is in dire straights. Its been in the shop since Wednesday and from what I understand it might be there a while. At first my friend Jason thought it was just a virus that needs to be removed, but now he thinks it may be more than that. He can't get rid of that blue screen of death! Darn it! I'll try to do "mini" updates using my cell phone, but I've never "mobile blogged" before, so we'll see how that goes!

Wow

OK, so yesterday we had to wake Maryam up at 10am because she had a PT appointment at 10:30 that we had to get her to. When I went to get her out of her crib I noticed that her oxygen tubing was wrapped around her neck 3 times. I felt absolutely horrible. Not to mention every bad potential scenario went through my head and REALLY freaked me out. Last night we ran the tubing not only down her shirt, but also down the pant leg of her jammies and this morning she woke up tangle free. (Insert sigh of relief here.)
Also last night Maryam decided that she can stand unsupported....she really can't, but she has no idea. She just lets go of whatever she's holding on to and tries different tasks with her hands. Last night she decided that she wanted to try snapping, when she was finished with that, she started clapping, then she fell on her hiny. Later she was standing trying to feed herself with both hands, then she fell on her hiny again. She cracks me up. I'm very proud of her for her efforts! Both her PT and her OT want her to stay on all fours for as long as possible, but now that she's trying to cruise and stand unassisted, its going to be hard to keep her down there.
Today Maryam has a PT assessment. Hopefully she does well. The appointment is later in the afternoon, so we won't have to worry too much about her retching. When she has appointments in the morning, she retches through the majority of the appointment and little to nothing gets accomplished.
Yesterday for lunch she dipped some Cheetos into some Gerber carrots and put the Cheeto into her mouth! How cool is that? I mean, it sounds like it would taste absolutely horrible, but I'm not going to stop her from trying new tastes or textures. Last night for dinner she tried bacon and seemed to enjoy it and for dessert she had a little ice cream, which she found absolutely amusing.

Fevers and sleepless nights

So, Maryam woke up at 4:19am and didn't get back to sleep until nearly 7:30. That sucked. Poor little punkin just isn't feeling well. I thought she was a little warm last night when we got home, I took her temp at it was 100.7. I figured, low grade, its probably just more teething yuckyness. However last night was different. She didn't wake up ready to have a party in da crib, she was crying. And it was one of those sad mournful cries that comes with big crocodile tears that breaks Mommy's heart. After about 3 hours of rocking and trying the whole CIO thing ( I SUCK AT THAT!) I finally managed to rock her back to sleep! My back is killing me because she wouldn't let me sit. That's when I knew she really wasn't feeling well.
But when she woke up at 9:30 she wasn't hot, or cranky or sad, she was back to being her happy self....my weirdo baby strikes again. So, we proceeded with our day as normal. We went to PT and she was fine! THEN, as PT was ending she got hot and cranky again. By the time we got home from PT her fever was up to 102 and we were starting her Motrin/Tylenol regimen again. I can tell she's feeling a bit dehydrated because she's drinking from Honey Bear pretty good today. So, I'm giving her extra water via G-tube after each meal and presenting Honey Bear cup every 15 to 20 minutes.
Deep down I think its just the yucky teething because she's acting normal, she isn't coughing, sneezing or having a runny nose. She hasn't touched or pulled on her ears and she isn't retching any more than normal.
But PT was GREAT today! She crawled across the play room while her PT criticized her every move, I love that. I find it fascinating how what I "misconstrued" as uncoordinated is "tucking her left knee and hyper extending her right hip." Its amazing what her PT sees that I don't! Am I crazy or do all babies start out crawling funny? At the end of the session the PT did say, "Well, she did just start crawling." I KNOW THAT! Does she?

Maryam started PT today!

Maryam started PT today! Hooray! She did wonderfully. Everything Tricia (That's Maryam's therapist's name) taught Maryam to do, she did! It only took about 4 times and then Maryam had it...or almost had it. Today we worked on getting Maryam's muscles in her torso to be even on both sides. We have lots of exercises to do to strengthen her weak side. Also, we're going to be working on getting Maryam to go from a sitting position on to all fours. So far, she's doing great! I think she's a little tired now, because when Brett got home from work I tried showing him and Maryam wasn't doing it anymore. I think part of it was that she was SUPER excited to see Daddy and there was a new toy motivating her. Strangely though, she actually "Navy/Marine Corps" crawled to her wipes box today. With all those toys you'd think she'd want one of them, NOPE, she went for the wipes. Strange little baby and we love her!

Physical Therapy Assessment

Maryam before therapy...

Maryam after therapy....

Maryam's PT assessment today was fantastic! The therapist pointed out all kinds of things that Maryam was either doing/or not doing that I hadn't noticed! Seriously, from head to toe! AND, I got homework! We have to work on her neck, her torso and tummy muscles, her left shoulder, the way she sits, the way she roles and the way she goes from sitting to laying and from laying to sitting. The therapist is super nice and Maryam took to her immediately. She was "amazed by her strength" because she fought Tricia on every body manipulation she tried!
The regulator on Maryam's O2 tank busted today. Scared the crap out of me! The part that the cannula goes onto broke off! And so she wasn't getting any oxygen. Thankfully we were only half a block from Momom and Popop's house. Popop rescued us. I put a new regulator on and now I have to order a new spare. All is well, just scared me.