A successful OT session

Maryam's OT session went REALLY well yesterday! Maryam's usual therapist Dawn is on maternity leave so yesterday she saw a therapist named Beth. Beth is the owner of the practice...I think. Anyway I had just started explaining to Maryam the idea of swallowing earlier this week and Beth took it to another level. What I had been doing was talking to her about what we do with the food after we chew it up. I told her that we swallow it and it goes down the throat and into the tummy. I showed her on her body and mine where the tummy is and rubbed it and said things like "we get full when we eat" and "now the water you just drank is in your tummy" or "the cookie will go into your tummy" or I would show her by taking a bite of something and telling her that its now in my tummy.
Beth had a GREAT idea, she walked Maryam through the whole process and exaggerated everything. She totally kept Maryam's attention the whole time too! She took a bite and then exaggerated the chewing and then when it came time to swallowing Beth had Maryam touch her throat and exaggerated a giant loud gulp so that Maryam could see, hear and feel Beth swallow. Brilliant! Maryam actually responded!
Last night Maryam was doing her usual pick off of Mommy and Daddy's dinner and completely ignore her own when I know for sure that she swallowed a piece of Mommy's taco! And then after dinner she requested the usual "Chatos". We saw her SWALLOW at least 7 maybe even 10! How amazing is that? Hooray!
My friend Christi asked, what is the Dietitian at CHOC going to say about the "Chatos"? And I have NO idea! BUT I'm not going to stop having Maryam eat ANYTHING until I'm instructed to do so.
Speaking of CHOC, I got some more information from our wonderful case worker yesterday. I got a link to some information on their website http://www.choc.org/feedingprogram/index.cfm The program sounds amazing. Brett and I cannot wait to see if this will do the trick for Maryam. She has come a long way with OT from not wanting to put anything into her mouth to now needing to learn to swallow. I'm very grateful to Maryam's therapists! But her therapists agree that its time for a more intensive treatment. I found an amazing story on the CHOC website about a boy named Ryen, you all should read it if you get the chance. I pray that Maryam will have as much success from the team at CHOC as this little boy did.

22 months

I think its funny that we mom refer to our babies in months. Today Maryam was exactly 22 months. STRANGE. Its hard to believe that in only 2 months my little baby will be 2 years old. When are we supposed to stop saying their age in months anyway? Maryam is wearing an outfit that Auntie Maymay (My friend Mayda) gave to her. I never thought this would happen to me, but I'm actually kind of sad that she's big enough to be wearing 24 months. Its weird, because for the first year and a half of her life I was SUPER happy when she'd go up a size because that meant she was healthy and growing. After hearing "failure to thrive" too many times you start praying for weight gain and larger clothes. BUT LOOK AT HER A YEAR AGO!

So small. Its almost like looking at two different babies! What a difference a year can make, well, what a difference a month can make! Just a few months ago Maryam was still on oxygen and not walking. Maybe that's why we mothers refer to our babies ages in months, because so much can happen in a month. OK, I solved the mystery.

Well, I've been a very bad blogger. I wrote the above passage yesterday and never published it. DUMB. Oh well. This photo is of Maryam and her OT Dawn. Dawn will be having a baby of her own in a few short weeks. Maryam really seems to like Dawn. Of course today Maryam did not perform to her best abilities. BUT she did swallow a Cheerio and a few pieces of a french fry. She also swallowed A LOT of ranch dressing which is good because ranch dressing has many calories in it!
I've been taking Maryam to the park in the morning so she can run out some of her energy. I've noticed that when she's outside all she wants to do is run around. It got me thinking that maybe she's not outside enough. So, I'm doing the good stay at home mommy thing and taking her to the park. Yesterday some moron lady asked me Maryam's age. I told her that she'll be 2 in December. (I avoided the whole month age thing that time...its hard to remember! I have to remember two! She's 22 months actual but 18 months and 1 week adjusted...c'mon!) She actually looked at her and said, "why is she so small?" Um, she's not! I got mad and wanted to say, "why are you so ugly?" but I didn't. I just said "She's not small, she's huge, she started out as only 1 pound 10 ounces." The lady said, "oh, wow. Sorry." I just took Maryam off the swing and left. Of course that made Maryam really mad...she wasn't done swinging, but I didn't want to have to subject myself or Maryam to anymore idiocy. I know that we preemie moms are a sensitive bunch, but really, Maryam isn't small for her age at all, not for her actual age and especially not for her adjusted age.

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!

OT

Well, now that cold/flu season are officially over, we are back on the PT/OT schedule two times a week. Already Maryam has had 2 OT appointments and an EI appointment this week. Both OT appointments were in Palm Springs. She did SUPER well at her OT appointment! We were all impressed. Maryam put everything in her mouth that we gave to her! Anything that she could hold in her own hand she'd put into her mouth, it was GREAT! And she did it both days! I was so happy about this because I was worried that she'd go back to OT and do nothing. I didn't want her OT thinking we weren't working with her during the time we took off. But Maryam made me proud!
We have PT tomorrow and then again on Thursday. Our first day off from appointments will be on Friday! Hooray! Just in time to wind down for the weekend. I think I'm going to force the family to have an uneventful weekend. We've been on the go since last Thursday, I think it would be nice to do a whole bunch of nothing. I was just telling my FIL today about all the driving we've been doing since Thursday, its insane!
Thursday from The Deuce to Lake Elsinore 1 1/2 hours
Friday from Lake Elsinore to the SD Zoo round trip 3 hours
Saturday from Lake Elsinore to The Deuce 1 1/2 hours
Sunday from The Deuce to Disneyland round trip 4 hours
Monday from The Deuce to Palm Springs round trip 2 hours
Tuesday from The Deuce to Palm Springs round trip 2 hours.....That's A LOT of driving!
Cynthia, if you're reading this...I think you're right, its time for that hybrid now!

OT

Maryam tried this chocolate spread stuff that is supposed to be like peanut butter. As you can see, she feels the same way about that as she does about most other foods. No THANKS! Poor punkin.

A VERY good feeding session!

Here is cutie Maryam sitting with Mr. Bishop. She's always so happy to be playing with the dog.

And now, she's trying to walk. I sure wish she'd crawl! What the heck man? How do you stop a baby from trying to walk? She wants to be mobile, but her upper body strength is too weak for her to get mobile on all fours.

So, Thursday Dr. Bromberger told us that Maryam is still experiencing the sensation of being thirsty. She told us to consult our OT and see if she can help us get Maryam to drink water from a cup. Friday morning Amanda tried 3 different kinds of sippy cups and Maryam wasn't interested in ANY of them. They both agree that water is the least "threatening" fluid to babies with sensory problems because its light and has no smell or taste. I kept trying all day Friday to get her to drink from a cup! No success stories to share from that day!
Yesterday we didn't even try presenting a cup to her. I figured, give her a break and try again tomorrow...and it worked! This morning she ate about a tsp of bananas and washed it down with about an ounce of water! We saw her swallow it and everything! Of course, it took LOTS of distraction to get her to let us put the cup in her mouth, but she did it! Her bib was hardly wet at all! We even saw the water coming back out of her feeding tube! Hooray!
OH and I know you guys all warned me about babies getting grumpy when the start to get teeth, you were all right! She's not too grumpy, but you can definitely tell that her disposition is a little off. But I'm super happy that she's finally getting a tooth!! w00t!

More OT

Before...

After...
I think OT gives Maryam a feeling of accomplishment! She should be exhausted and worn out after therapy, but she's usually in a very pleasant mood. Today she ate apple sauce and mixed grain rice cereal. Well, I wouldn't go so far to say she ate it, but she had a few swallows of both. She played with a tooth brush, her NUC brush, a spoon and some toys. Her therapist Amanda says that Maryam is passing all of her developmental milestones for an 8 month old, except for rolling over on to her tummy. But we're working on that with her developmental teacher!!!
Nothing else new to report!!

Another OT apt.

Brett and his mother took Maryam to her second OT appointment on Thursday morning. Amanda, her OT, had us buy an Oral B Pulsar toothbrush to use on the outside of Maryam's mouth. She showed both Brett and Grandma how to use the brush and the steps we'll be taking in the next couple of weeks to help desensitize Maryam's little mouth. She still seems to be enjoying her massage with her surgical brush and her joint massage too. So, that's good news. AND, we've been able to get food in her mouth and have it stay in there too! Usually the first 2 feedings of the day she's less interested in food than she is by the third feeding of the day. But by the 3rd feeding, we've massaged her gums 3 or 4 times already and she's had 6 massages with the brush.
Brett's parents had Maryam all night last night! Grandma said that Maryam ate well for her today. We went to OC for Justin and Lynn's rehearsal dinner. My parents got us a room at Embassy Suites for our anniversary. Today we had breakfast and lunch with the fam and made it home for dinner with Brett's parents. Maryam was SO happy to see us! She smiled REALLY big and reached for us! It was GREAT! She is finally reaching for us! Now, if only we could get her to crawl!

Occupational Therapy

Maryam had her first appointment with her new Occupational Therapist Amanda. She's very nice and super informative. She has a different approach to oral dysfunction than her other OT's have had in the past. She wants to try to desensitize her other senses in an attempt to desensitize her mouth and gag reflex. We have to give her a baby massage every 2 hours using a surgical scrub and we have to giver her external and internal mouth stimulation 6 times a day. She seems to LOVE the massage, who wouldn't? But she really dislikes the oral stimulation. Amanda said that the baby massage could make her cranky, but so far she hasn't had that problem...yet. Her next apt. is on Thursday morning. Brett and his mother will be taking her down for OT, a weight check and to pick up some more meds. I'll be getting my hair done for Justin and Lynn's wedding! Fun, fun, fun!!!
I'll have Brett give me the run down so I can let you guys know how it goes on Thursday and I'll definitely be posting pictures of the wedding!!!
Oh and I hope you all got a chance to check out the new video! She's constantly calling Mama now! Its so funny!!! I LOVE it!

And also, go check out Charlie Mae's pictures! She is SO cute! And so happy! Here is an example of just how cute she is.

And congratulations MAGSIGS!! They found out that they'll be having their THIRD boy!! Julie, you're going to have your hands full! But like I said, my S-I-L has three boys and LOVES it!!!!