Room air

M's been on room air since a little after noon today. At 1st she was sating at around 95. An hour later she was down to 92-94. Around 4 she was down to 91 -92. The goal is to keep her above 92% on room air. She's still dependent on Tylenol to keep her temperature down. If she doesn't get it by the 4 hour mark her fever spikes again. Right now its 102 again.
She asked for food a bit ago, when I gave her some she gagged and wretched. So, I guess she's still not ready. She's doing well drinking water.
M has been doing a lot of talking in the past half hour. She's asking for books, stickers and paper to draw. The IV fluids have really given her some color back and have filled her face out some.
She ended up taking a 4 hour nap. After only 3 hours of sleep last night she definitely needed it!
Yaya and Papa are here visiting her. They're all bundled up in their protective gear. M is smiling. I'm happy to see her looking more like herself again. (Insert sigh of relief here)
Sent from my Verizon Wireless BlackBerry

Photos from today

Here is Maryam sitting next to her favorite chair in the house....why? I don't know. But when I took this picture she was trying to say "piggies." It sounded more like "peeeg."

Here are Maryam and Anna playing in the "off limits" room. They do this a lot. I'm not very good at keeping it off limits though.

Here is Maryam running outside in the rain....Bishop decided to chase her. Notice how her left arm is. That's what the therapist was talking about. Her left arm is practically across her chest while the right arm swings as its supposed to. And ALL day today I had to keep telling her not to walk on her toes. She understands me because she goes down on to her heels for a few steps, then she's back up again. I'm doing the exercises so hopefully we'll see an improvement over time. One thing I noticed today while doing the exercises was that her left ankle is much tighter than her right ankle. When I told Brett he was concerned because the trouble with her shoulder is on her left side too. When all the CP talk was going around a few months ago, we did some research and learned that some of the common signs are having one side dominance, tightness in the tendons and low muscle tone. Well, her left ankle is tight and her left shoulder has very low tone. But does that show that one side is dominant over the other? I'll have to ask about that.
In VERY good news, I heard back from Dr. Wojtczak, Maryam's Pediatric Pulmonologist and he agrees that her numbers look good enough to stop supplementing her oxygen! HOORAY! He wants to wait 4 to 6 weeks to see if she continues to do well, if she does, he'll write the order for her to be released! HOORAY! I've still been checking her every night and will continue to do so while we have the pulse oximeter here. Last night when I went to sleep she was at 97%! That is AWESOME!
Keep her in your prayers. Thank you.

Monkey see, monkey do?

Here are the 3 kids laying in bed watching a Baby Animals DVD.....I wonder where they got that from? Hmmm? Could it be from watching their daddies play Play Station 3 for 5 hours? Hmmm? I dunno...what do you think? Isn't it Bromantic? (If you sing that, its WAY funnier!)

Here is Maryam after her bath. For some reason tonight she just wasn't feeling it. From the minute I put her in the bath tub it was like she was in sensory over load. It was really weird. What is normally very relaxing for her was the complete opposite for her tonight. She started crying and trying to climb up my arms to get out. I couldn't tell if she just wanted out of the bath tub or out of her own skin, IT WAS BAD. Then when I did get her to calm down (I did brushing using the washcloth instead of her actual brush) she was fine! She played with all of her toys and didn't want to climb out of her own skin or the tub anymore. But as soon as it was time to get out, she went into sensory over load again! This time I used the towel to brush her down and when I got her to her changing table I was able to do the joint compressions and she totally mellowed out again.
After the joint compressions I rocked her to sleep feeding her. It took barely 10 minutes for her to fall asleep. And even after all the crying from the sensory over load, she's respirating fine! When I sat down to write this blog entry she was sating at 94%! How awesome is that?

I TOTALLY forgot to mention the great eating and drinking news for today...DUH! Maryam drank some capri sun today! She took Anna's from her (sorry Anna) and just started walking around the house drinking! How cool is that? Then I gave Anna hers back and got a new one for Maryam and she continued to drink it even though it was a different flavor!!!! Hooray! AND, AND, AND Ian says he saw her swallow Jell-o! Ian is very intuitive of Maryam's eating problems, especially for only being 4. Everyday he asks me, did Maryam swallow anything today? And every time he eats something in front of her he wants her to watch because he's "going to teach her to swallow today." But even if she didn't swallow the Jell-o (I really think she did!) she did swallow some watermelon! She didn't swallow the whole big piece that she stuck into her mouth, but she definitely swallowed most of it! She just sucked on it until there wasn't much left. I did the stroke her neck trick that Amanda taught me, and the blow in her face trick that Amanda taught me and it worked! Christi, Ian, Anna and I all started blowing in her face while I stroked her neck and eventually the teeniest tiniest piece of watermelon came out and that was it! The rest went down her throat! HOORAY!

We're on day 4 of really bad teething issues. Hopefully she'll get some sleep tonight. Last night was better than Monday night and Tuesday night where we got a whole 4 hours of sleep between the two of us. It looks like the molar on the bottom left MIGHT finally come through sooner than later. The gums look more yellow and white tonight than they have all day. Wish us luck!

Catching up!

On Friday afternoon Maryam decided that, "anything Anno can do, I can do too" and picked up her sit-n-spin to walk through the living room and sadly took a header. Everyday Anno (that's what Maryam calls Anna) goes into Maryam's room and brings her sit-n-spin out to play on. Well Anna has no problem carrying it around and moving from one end of the house to the other, but Anna is bigger and stronger than Maryam. Apparently Maryam doesn't know that, because on Friday after Anna left Maryam tried doing what she had seen Anna doing the past few days, lost her balance and fell with her head first right on to the top of the toy. Maryam ended up with a cut on the corner of her eye and a bruise down the side of her cheek. She's all fine now though.

The rest of these are just cute pictures of Maryam. The above photo I thought was a bit crazy because it was the first time I saw my resemblance in her. Well, not my resemblance now, but how I looked as a child. I look at the above picture and I don't see my baby, I see a little girl. It makes me both happy and sad. Happy because she's growing! Sad because she's growing! LOL, wow, being a mom has made me all mushy.

We went to San Diego yesterday evening to see Maryam's pediatric pulmonologist. We LOVE him, however yesterday Maryam did not. As soon as he walked in Maryam got nervous and scared. It was strange. She's seen many doctors in her life and this was the most nervous and scared I've ever seen her and he wasn't even wearing a white coat.

He was happy to see that Maryam is off of the O2 during the day and is anxious to try to get her off at night. He prescribed an antihistamine to see if that will help her with her restless sleep, the darkness under her eyes, and the dried up snot on her nose every time she wakes from sleep. He wants us to give her the new med at night with her last feeding and spot check her at least twice during the night to be sure she's sating above 90%. He says she should sat between 90%-92% and he thinks she can do that on room air. after 7-10 days he wants an email letting him know if she passed or not. Hooray! How rad would that be? So tonight we start a new test! This is a test I'm VERY happy about!

He also confirmed that she qualifies for the synagis shot again this year! I'm so glad of this. He said she meets all the standards: under 2 when RSV season starts and was receiving pulmonary therapy within 6 months of the season starting. So, basically if she had been taken off the O2 before May 1 she wouldn't qualify, but because it was in July she does! w00t!

Only other news to report is that Maryam is talking WAY more than she was. She tries to say everything that we say. Its really cute. Of course hardly any of the words come out sounding right the first couple of times, but she's getting there!

Checking out the terrain

Mr. Bishop in our amazingly landscaped backyard. Don't be jealous y'all!

Here is Maryam checking out the backyard. She NEVER wants to go outside to play, probably because its way too hot! But yesterday she kept pointing outside and saying, "iontdat." Which we have figured out means, I want that. So, we took her out to see what she thought. Mostly she lost her footing and fell down a lot. But she did have fun putting her hands in the dirt and picking up and dropping rocks. Of course, I didn't get any of that on film, because I left the camera inside. By the time I came back out, she was on the porch and ready to go back inside.

Even Mr. Bishop got tired of being in the sun!
Today we took M out front to check out the front yard. Daddy was out watering, our sprinkler system needs some work, and M was wandering the yard. Our street is on kind of a hill so there is a good 3 feet difference between our house and the house next door. M was over looking near the property line when she slipped on some dirt (SHOCKING) and then rolled into the neighbor's yard. She rolled twice! It was hysterical! The good news is, she stood up and laughed! She wasn't embarrassed or hurt, I think she thought it was fun.
We're still testing Maryam's O2 levels at night. A couple of nights ago I put the pulse oximeter on her and she wasn't staying over 90% on 1/16 liter of O2 per minute. So, I turned her up to 1/8 LPM and nothing! It didn't budge! FINALLY it went up to 92%! This scared the crap out of me. It took me going all the way up to 1/2 LPM until she finally got up over 95% and even then it stayed steady around 95-96%...not good. I started skimming my memories for the day, was she feverish, was she breathing hard, did we give her the breathing treatment, does she need lasix? Then, it happened. She rolled from her back to her stomach....and voila! 100%! Clear as day...100%. So, I turned her down to 1/4, still 100%, turned her down to 1/8, still 100%, turned her down to 1/16 and we got some movement...98%. 20 minutes later I go in to see how she's doing...still at 99% on 1/16 LPM. Relief....I was going to finally go to bed. Then it happened again....her levels started dropping. When it stayed at 92% for more than a minute I got up to look at her, I wanted to see if she had her face buried in the sheets or something, NOPE! She had rolled on to her side!
OK...I've never been more convinced that her O2 needs at night are positional. When she's on her tummy, she's fine! Its when she's on her back or side that she starts requiring help. When she had her Preemie Follow-up appointment in June her neo put in a referral for Maryam to see an Ears, Nose and Throat doc because her tonsils looked large and because Maryam is a restless sleeper. Her appointment is July 31st and I'm definitely convinced now that she needs to see this specialist.
In molar news, it still hasn't cut through. Last night poor Brett had to stay awake with her until 6am. Stupid me got dehydrated, so I was pretty much useless. I had her up until 2:30, when I got so dehydrated that I got sick and could barely stand. At that point Super Daddy took over and I started to recover.
This evening we went swimming with The Carnes Fam. Anna tried teaching Maryam to do Patty-Cake better! It was super cute! Super Mom Chrissy actually took photos of the girls together, I stayed in the pool. When she sends me copies, I'll post them. Tonight Maryam went to sleep at 11pm, since she only had a half hour nap today, ran a muck ALL day, went swimming for an hour and a half and only had 5 hours of sleep last night, I'm anticipating a full night's rest. Good night!

98% Woo Hoo!!!!

98% last night! And 98% this morning! That's 2 weeks off of oxygen during the day! Hooray!!!!

Maryam's PT & OT got approved finally! The Regional Center was asking for a CP diagnosis to continue her services. But upon reading the report from her neonatologist, their doctor approved the authorization without the diagnosis. We were also told that if Maryam doesn't receive a diagnosis before her second birthday ALL of her services will stop. So, we'll see what happens with her therapy in the next 6 months. Hopefully she'll be all caught up by her birthday and won't need anymore therapy at all! Here's to hoping!!!!!
"Special Needs" kids parents have a funny little supportive community. We were running out of Maryam's food and her order hadn't come in yet. I called Maryam's EI teacher because she once told me that she has another patient who is on Pediasure but can't possibly drink enough of it, so they always have a surplus. They give this surplus to her. Well, when I called yesterday she said she didn't have any, but that she'd call the little girl's dad to see if they have any to spare. Turns out that they did. Their daughter was switched to a different formula so they had 6 cases of it left over. They told Dona to call me and give me their number. When I called them, these perfect strangers invited us to their house and gave us ALL of the Pediasure! How wonderful is that? Of course while we were there, we mommies talked about all the things our kids are doing and then listed off everything they're still not doing. But it was VERY nice of them to give it to us.

Mommy and Maryam

I LOVE this photo. Mommy and Maryam. So happy.
Today Maryam's O2 sats were wonderful! She stayed at 98% ALL day! How wonderful is that? I might actually be comfortable turning in the pulse oximeter soon. MIGHT, probably not though! I'm still a little bit paranoid! Rightfully so, I think. I'm just so happy to report that she's tolerating us weaning down the medicine and tolerating only being on O2 at night! I'm so happy.

Doctor Appointment

Maryam lost 6 ounces. But I'm not worried because a. it was on a different scale than her last weight check b. she's been cruising, crawling and moving A LOT more since being off of the oxygen c. giving her less calories has helped her drink way more and d. her pediatrician wasn't worried at all. Today Maryam has already drank upwards of 3 ounces of water and has had a few sips of Pediasure too!
When the nurse and her doctor saw her they were both amazed by how different Maryam looks! Neither have seen her in quite a while. The whole office was SUPER happy to see her off of the O2. And when the nurse hooked her up to the pulse oximeter her O2 sats were at 97%! It was perfect!
Maryam was due for a few shots today. She didn't like it, but she got them and was fine withing a few seconds of me picking her up. Of course the Elmo stickers that nurse Sherri gave her helped too! Girl has a thing for Elmo!
After Maryam's doctor appointment we brought her home and put her in her little baby pool. She had a GREAT time. I didn't have my camera with me, but I managed to get video of her on my BlackBerry. Once I figure out how to transfer the data from there to my computer, I'll upload it to the blog.

1 week down

Maryam has been off of oxygen during the day time for a week now! How amazing is that? I tested her tonight for 15 minutes and she stayed between 97-100%, HOORAY! That made me very excited. The majority of her tests have shown her oxygenation level around 97-98% after a lot of crawling and playing. I left a message for her neonatologist to see what she thinks of those levels. I'll talk to Maryam's pediatrician about it tomorrow as well. Maryam has to go in for shots....boo hoo.
News, news, news! Maryam took 2 steps tonight without holding on to anything! I set her down because I had to go do something and she reached her hands up and took one step, then another step.....then she realized what the heck she was doing and sat down immediately! About 10 minutes later she did it again! Ever since the O2 has come off she's started cruising and walking with our assistance and walking using her little lion toy that her daddy put together for her.
I know we're supposed to make her crawl, but when your daughter looks up at you with her arms reaching for you and takes 2 steps towards you, how do you tell her to go back on all 4's? Anyone?

Getting a little tired

We just tested Maryam again and her sats fell a little bit. She averaged between 95-97%. I'm kind of bummed, but we're not giving up on her yet. Last time she was tested off of O2, after a few days she got tired too. Stamina and endurance both major issues for a little baby with lung disease. Hopefully her next test will be a little better. I'll let you know, I always do!

In other news....Maryam is managing to stay on her feet when pushing her little lion toy around! The first few days that she used it she would stay on her knees to push it. But last night and all day today she's been staying on her feet! Its ADORABLE!

Day 3, still at 97%

Maryam decided to "help" Daddy take the cannula off this morning, by pulling her tape off without adhesive remover. You can see the big red mark on her right cheek and the little red mark on her left cheek. Poor punkin!

This dress is from Auntie Pami, a pink Pooh dress! How perfect is that? It's 18 months and tight around the mid section! I guess she is getting chunky! But from what I've heard, 32" and 23.5lbs should still be on the thin side! But she certainly doesn't appear thin!!!

Her test this morning was GREAT! 97% and going strong. That was after A LOT of crawling and cruising around and after her morning meal! So, I'm VERY proud of that reading.

Day 2 and all is well!

We took Maryam off of her oxygen this morning around 9:30am. I waited for Brett to wake up before I took her cannula off. She tested well ALL day! This evening she tested at 99% for about 10 minutes! How GREAT is that? Right now she's being fed her last meal for the day and is starting to go to sleep. I noticed that the past 2 nights she has slept better. I'm wondering if that's because she is not getting medicine at night anymore. I'll have to ask her pediatrician if those prescriptions could affect her sleep.
Well, Maryam has certainly gotten use to not having her O2 tube attached! She's started cruising along the furniture in both directions! AND, she can walk if she holds both of my hands! All of a sudden, she just reached for my hands and took off! Her steps are awkward, unbalanced and clumsy, but she is definitely trying to figure out how to walk. I, of course, keep trying to get her to crawl. I'm not going to stop normal development, but I'm not going to overly encourage her to walk faster than necessary. I even put her lion walker toy in another room! But Maryam found it and dragged it out.
She drank 3 ounces of water tonight! She just gulped it down. She didn't drink much the rest of the day, so I guess she was making up for it.

Kleenex anyone?

Now that Maryam's free of her oxygen tube bindings, she is getting into EVERYTHING! She crawled behind the furniture and pulled the Kleenex box down and then proceeded to pull most of the tissue out of the box and throw it EVERYWHERE!

What a mess!

In this photo she just got finished tearing a piece of tissue apart and throwing each piece on either side of her.....silly baby.

We've done two sat readings today. The first was great! She stayed between 97-98%, just like yesterday. The second one was mostly at 95-96% and she was eating. I was tube feeding her and she was chewing on some Cheetos, pretzels and chips. So, Maybe the breaks in breathing for chewing or swallowing affected the reading? Most likely she uses more energy eating than she does doing nothing!
We got Maryam's new Mic-Key Buttons today. She's grown so much that she's had to move up a size in buttons. When the one she has wears out, I'll put the new one in.

Maryam, Mayda and one little Honey Bear Cup

So, Mommy's friend Auntie Mayda came over tonight for a visit. She wanted to see Maryam without her oxygen on and drop off a book for me to read. While she was here Maryam drank AT LEAST 2 1/2 ounces of water out of Honey Bear Cup! The GREAT thing is Maryam was drinking like a "normal" baby would drink! Instead of one swallow at a time, VERY SLOWLY, she was taking 5 or 6 swigs and swallows at a time! It was SO WONDERFUL to watch! She did this after we put the oxygen back on her. But we did do one more O2 test before we put the cannula back on and she was sating anywhere from 96% to 100%!!! When she was squirming around the lead wasn't working properly and it would go down into the 80's, but then would pop back up to 100%, so it wasn't a true reading. But how GREAT is that? 14 hours without oxygen and still managing to sat at 100%!! WHAT A GREAT DAY!

12 hours and going STRONG!!

LOOK AT THAT FACE!!!!

Profile.

Those BIG flirty eyes and NOTHING on her cheeks!

So, we just hooked her up to the pulse oximeter and Maryam's O2 sats were 97-98% again! She's still going strong! I'M SO PROUD OF HER!!!
On a TOTALLY selfish note, can I just tell you how wonderful it was going out in public and not having to see all the stares! No one did a double take, no one asked a stupid question, no looks of pitty, just us and our baby! It was RAD!!!!
On a totally different note.....How do you know when your baby has had too many Cheetos or Cheese Puffs? When you're walking through the aisle at Costco and they point at the bag and say, "ooh...num nums!" LOL, I thought it was hysterical!

Room air, test 1

We took Maryam's cannula off this morning to change her tape and decided to see how she was sating on room air. She was at 97-98% for about 10 minutes. We checked her again at 10am and she was still at 97%. I just checked her again at 11:30 and she was at 99-100% for about 5 minutes! So far, so good!