Its not easy

Tonight while I was giving Maryam her last bolus she asked for Honey Bear cup. I gave her the cup and after a few drinks she started choking on her water. She still has a really rough time drinking water when she's tired. She has to concentrate to drink as it is, so when she's tired she gets lazy and I think she just forgets that she's supposed to swallow it, not breathe it. The choking happened just after 10:30 and her poor little lungs still haven't recovered. She keeps waking herself up coughing. It just breaks my heart.
I forgot to mention in the "health update" entry that Maryam's pediatrician wants to keep her out of physical therapy and occupational therapy until she goes to CHOC. She, like Brett and I, doesn't want to risk Maryam getting sick again before she goes. We've been put back into isolation, which will be difficult but well worth it.
Oh and in case you're wondering about the picture, I took that one tonight. I said "make a funny face" and she screamed!

Spaghetti

Maryam eating Spicy Tomato Spaghetti at BJ's.

FUNNY story. After the park, we all went to dinner at BJ's. Sarah ordered a children's plate for Charlie because she eats! B and I did not order a plate for Maryam because she does not eat. We swear that the people at the next table must have thought that Maryam was the unloved child because the only food she got was the food off of our plates! It wasn't until Auntie Sarah pushed her plate away that Maryam really dug in. Sarah yelled for me to take the pasta away from Maryam because of how spicy it was but Maryam just kept eating it. I took a bite and needed water or Coke immediately, Maryam however, was fine! The weird thing is I love spicy food! The hotter, the better. But this spaghetti was hot and Maryam loved it!!!!
And in other great news, Maryam has started proclaming her thirst!!! She actually says, "Mommy cup peace, thusty"! HOORAY!!!! AND every morning she is asking for food! She is even starting to ask for specific foods. And same with lunch and dinner! She is requesting foods and asking for "num nums". This is great news because it means that she is starting to except that she is supposed to eat. She knows to feed her dolls and stuffed animals, and Mommy and Daddy and Mr. Bishop too!
But then she'll do something like taking her play syringe from her doctor kit that she got for Christmas and putting the syringe to Mr. Bishop's tummy and saying "num num eat Bichop". She kills me.

Two more things!

1. Maryam requested, chewed and swallowed upwards of 20 Cheerios tonight!!!!!! AND managed to drink half of a Honey Bear Cup in less than 3 hours. I'd say that is some GREAT progress. I kept telling her to swallow the Cheerios and then she rubbed her neck, swallowed, opened her mouth and said "aaaaa". I actually think she's starting to understand. (Knock on some good strong wood.....Or as one of Maryam's Neonatologists once said, "there isn't enough wood in all of San Diego County to cover what you just said!" But that was only in reference to me saying...."She's fine, what else could go wrong?" HA!)
2. The new blog layout is brought to you, yet again, by Christi and the help of The Cutest Blog on the Block. Thanks Christi! Can you believe she even remembered that I wanted it to be pink and green? How RAD is she?

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!

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.

Final Tally

So, our first day of experimenting was both good and bad. Good because Maryam drank A LOT orally! Bad because she has free will and her will told her that Pediasure does not taste good.
Midnight:
Water: 14 ounces
Formula: 1 1/2
8 ounce bolus at 9:00pm
8 ounce bolus at midnight

Tomorrow is a new day!

Tally

Noon:
Formula: less than 1/2 ounce
Water: 5 1/2 ounces

ALL ORALLY! Now, I just have to figure out how to switch the tally so the formula amount is higher than the water amount. So far, I've resorted to hiding her water cup in hopes that it triggers a reach for the formula cup. Maybe I'll make the formula more appealing by putting it in her Backyardigans cup instead of Honey Bear Cup.
Next meal time is at 4pm, I'll update again after that. I'm VERY pleased with our results thus far, but I'm hoping for more formula to report on my next entry.

Honey Bear cup

So, Maryam was drinking and drinking and drinking water out of Honey Bear Cup about an hour ago, so Brett and I decided to try some Pediasure. She was due for a meal time at 7pm, so we figured she could be getting hungry. Wouldn't you know it? She actually drank some watered down (like it doesn't taste bad enough on its own) Pediasure right from Honey Bear cup! It wasn't very much, but if I had to guess, I'd say she drank about a half an ounce! Hooray!

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.

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!

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!

Maryam drinks Iced tea! FROM A STRAW!!!!

Yep, believe it or not (I still can't!) Maryam is drinking from a straw! She's been pulling some up the straw using honey bear cup, and I thought she was only able to do it because that cup is designed to be easier. But she did it! From a regular straw! Hooray!

Apparently she likes iced tea! Who knew? Oh and she ate corn bread at dinner tonight. She picked it up off of her high chair tray and stuck it right in her mouth! Several times! I honestly think more went into her mouth than on the floor. But that could be an optimistic thought.

Honey Bear Cup

I mentioned to Maryam's EI teacher that her PT thinks Maryam's fine motor skills are grossly delayed and suggested having Maryam sit at a tray and use her hands. The PT thinks that by having her sit at a tray she'll have to lean forward using her tummy muscles and she'll work on her fine motor skills playing with her toys. Maryam's EI teacher agreed and we set up this little chair and tray to see what Maryam did. You can see what she did when she got tired! She just sort of leaned over backwards and upside down when she got tired of sitting up.

Maryam' Honey Bear Cup came in today. And of course, she doesn't like it. At first she wouldn't even let me put the straw in her mouth, but as the day moved on she got more comfortable with it. She let me put the straw in her mouth, but when the water would come she'd just spit it out. I have to work on that behavior quickly. I don't want her to think that doing that is normal or OK. She drank at least 2 ounces of water today and she enjoyed some more french onion dip. Turns out she doesn't like asparagus spears, she is definitely her Daddy's daughter!
Aunite Sarah and Charlie have been visiting for the past 2 days and Maryam has really picked up on Charlie's movements. Charlie is pulling herself up to stand, she pulls herself up on the furniture, on toys, and on us! Tonight Maryam pulled herself up to stand too! She just grabbed the reclining chair and my mom's legs and pulled herself up! She did it earlier too on a toy, it freaked me out! I kept thinking she was going to bang her head, but she didn't. She did this a few nights ago too, I guess she's just growing up! Also, Maryam is successfully pulling herself up to a sitting position all by herself now. I saw her do it at least 7 times today! I just can't believe how much she's accomplished in the past few months, I'm so proud of her.

Showing Off

Maryam drinking water from Daddy's glass!

Seriously!!! This made me cry.

Just amazing. No other words are good enough to describe these photos. AMAZING.