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.

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!

Maryam walking..

Maryam walking around our new place waving to everything. She does laps around the dining room table pretty much all day...she does take a break from the dining room table to do laps around the coffee table though.

Maryam takes her first unassisted steps!

Maryam takes her first steps!!!


Today Maryam took 8 ot 9 steps several times all by herself! I stood her up, like I normally do and she just started walking! I couldn't believe it. Normally when I stand her up, she sits down, or grabs my fingers and takes off. This time she just went!!! Hooray!!
Charlie Mae is here and Maryam's been watching her walk around all day, maybe Maryam got a little bit jealous! Who knows.
Still no luck with drinking the formula. I've tried chocolate and vanilla now, both have had the same results. We had some better luck by putting the Pediasure in a McDonalds cup! I tricked her. I made her think she was getting Mommy's drink. She took a few swigs..then nothing. So far she's had about 8 ounces of water and maybe an ounce of Pediasure. I guess it will be another night of bolus feedings.

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?