Maryam the Miracle Micro Preemie

Farewell

2009-09-17T13:59:00.001-07:00

Now that I have the honor of being the mother of not only one miracle baby, but two beautiful miracle babies, I decided to start a new blog that reflects my new situation.
Thank you VERY MUCH for sharing Maryam's journey with us from birth to now. Its going to be wonderful sharing all of her new experiences as a big sister. And thank you also for welcoming Jax into our world. It is going to be a new fun adventure sharing the daily developments of another baby.
If you'd like to keep following Maryam and start following Jax the new blog is called Preemie Pandemonium.

Jax day 5

2009-09-15T08:07:00.000-07:00

Jax is still doing very well. He's up to 10mls every 3 hours for his feedings. Thankfully, he's still on room air, and at this point it looks like he can stay that way!
He's already wearing clothes and seems to fit into the Preemie sized clothes perfectly. As of this morning he's back up to his birth weight of 4lbs 4ozs.
I'm waiting on lab tests to see if I can get sprung from this joint some time today. If and when I do, I'll upload all of Jax's photos and transfer everything to our new Preemie Blog. I decided that it would be easier on mama to only have to update 1 Blog instead of trying to maintain 2.
Check back tomorrow or later today for new pictures!

Sent from my Verizon Wireless BlackBerry

Welcome Jax

2009-09-12T09:33:00.000-07:00

Meet Maryam's baby brother Jax! He was born last night at 7:57pm and weighed 4lbs 4ozs and is 18" long.
Jax is strong! He's on room air!! Will update with more later.
Sent from my Verizon Wireless BlackBerry

2009-09-10T21:50:00.001-07:00

Maryam eating chips & a pregnancy update

2009-09-10T18:45:00.000-07:00

I just thought this was a great picture of Maryam eating! Look at how relaxed and non-threatened she is by holding and eating!!! She is an entirely different child than she was before the CHOC Feeding Clinic.
She looks at food very differently than she did prior to learning what to really do with it. Now she knows that food doesn't have to be feared. Food isn't scary. And yes, food can even be enjoyed. Maryam loves chips! I cannot wait to remove that button from her tummy. I think it will be great when the only button on her abdomen is her belly button!!!
In non Maryam news, I've been in the hospital since Tuesday afternoon because of Pregnancy Induced Hypertension. Since my arrival my blood pressure has been brought down and controlled by the combination of meds and bedrest. I really tried being on bedrest at home, but those of you who know Maryam know that she is a VERY active toddler. She takes in 1200-1400 cals a day and burns the same! We know that because her weight doesn't change!
It looks like the only way I can get real bedrest and not "Jennifer's fake version" of bedrest is to have hospital bedrest. The bummer about that is having to be away from Maryam for another 5 weeks, living in a hospital and being away from my family & friends. The good thing about it is if I can keep the BP down, the baby won't have to be delivered prematurely. Imagine the Preemie pandemonium with two of them in one house! Agh!!!
I am trying to convince the perinatologists that I can do bedrest down the street at our friend Jen & Mike's house. They live 4.5 miles from the hospital and Maryam can visit me there. I don't want her to visit me here because she's all too familiar with hospitals and doctors and they freak her out. Just going with me to a prenatal check-up scared her. Seeing me laying in a hospital bed with an IV would be too much. So, maybe by the end of the weekend I'll be sprung from the hospital and staying with friends. Wish me luck!
Sent from my Verizon Wireless BlackBerry

Non-sanctioned eating trial

2009-09-09T16:15:00.000-07:00

So, last week mama did a little trial on Maryam and her new eating abilities.
1. I wanted to see if I can get Maryam to take her meds orally.
2. I wanted to experiment with more solid foods.
3. I wanted to see if she can go a week without a night time bolus and NOT lose weight.
#1-success
#2-success
#3-success
Hooray!
As for getting Maryam to take her meds orally I mixed 2 ounces of fortified strawberry Pediasure with the meds in her Honey Bear Cup. I gave it to her when she woke up every morning and then again at night around 7-8pm. The super great news is she drank it down in about 10-15 minutes!
As for experimenting with more solids, Maryam did exceptionally well! In the mornings she actually asked for pancakes or waffles or a Hershey Bar. I cut them up in very small pieces and she was able to get half of either the waffle or pancake down in about 30 minutes at breakfast!
At lunch time I offered her Mac n cheese with pepper and she could eat almost half a serving of ready Mac in the allotted 30 minutes!
At dinner time we've been much better at serving her what we've been eating and it turns out that Maryam loves ground beaf and tacos! She asked for tacos a couple nights in a row! Maryam went two whole days without a single pureed meal!!!!
As for Maryam's weight, I'm not going to lie, I was nervous! But, my fears were unfounded. Maryam didn't gain, but she didn't lose either. We all joke that Maryam is so active that it doesn't seem possible that she doesn't drop a pound everyday!
Maryam managed to keep her weight on, take her meds orally and progress with her solid foods. I have to say, it was a GREAT week!

Sent from my Verizon Wireless BlackBerry

Eating, eating, eating.....

2009-08-28T19:22:00.000-07:00

I bet you're starting to wonder if we talk about anything else in this house besides Maryam's eating progress. The truth is, yes, but not much else!
Maryam ate an entire Maryam sized bowl of mac & cheese tonight for dinner NOT pureed! Woohoo!!!!! That's HUGE! It took her a little over half hour, but she did it.
Maryam and Daddy had a great time at Disneyland yesterday! They went to both parks, rode on 10 rides, watched the parade, fireworks show and Fantasmic. They didn't get home until nearly 2am. Thankfully Maryam stayed asleep when he took her out of the car. He said she ate really well at the park and snacked on chips and popcorn between meals. Maryam loves salty stuff. One of the attractions that stood out with Maryam was the Muppet Theater 3D Show. She has been watching the Muppet Show all day on DVD because of it. Earlier in the week she informed me that she'd like to be Fossy Bear for Halloween. Only Maryam.

Let them eat cake!

2009-08-28T19:18:00.000-07:00

Here are some photos of Maryam eating cake! Yep, all by herself! She ate all the frosting off and only had the bare minimum amount of actual cake, but hey, at least she's doing it on her own!

Here are Ian and Anna with their messy cake faces! It was Ian's 1st day of kindergarten!!!!!

Um....

2009-08-28T19:16:00.000-07:00

I walked by Maryam's room the other day and this is what I saw. She was standing on the edge of her bed, holding on to her bed rail, watching Peter Pan. The funny part is her chair is right below her. So, she could have sat comfortably and watched the movie, but this is what she chose to do instead.

And yes, I know her room is a mess, but I can only straighten it up so many times a day! Bending is getting harder and harder EVERYDAY!

Who needs toys?

2009-08-28T19:12:00.000-07:00

Maryam brought this box out of her room and ignored it for a while.

Then we looked over and saw her sitting inside. Mostly because we heard, "look at me!!!"

This lasted for about a half hour or more. She just kept getting in and out of the box. Silly Maryam.

Painting with Daddy

2009-08-28T19:09:00.000-07:00

Look at all those beautiful hand prints. Then she said, "Daddy do it!"

And he did, of course.

And Maryam helped.

She LOVES to paint!!!! We do this everyday.

More eating progress

2009-08-26T23:48:00.000-07:00

Maryam had a GREAT eating day again today. For breakfast she decided she wanted a pancake. And the way we make pancakes we can get 500-600 calories in her with one pancake! For lunch she had a bowl (1 cup) of soup, which is another 350 calories. The big news is her dinner. She ate hamburger helper, NOT pureed and mac & cheese NOT pureed!!!! How amazing is that? When we were at CHOC we were always trying to get her to eat mac & cheese and she just wouldn't do it. Tonight she saw Papa eating it and started stealing from him! After about two bites she decided that she needed her own bowl of mac & cheese! Hooray!!! Then for dessert she ate actual ice cream! It was the funniest thing ever. Every time she took a bite her whole body would do this little shake because of how cold the ice cream was in her mouth. It was hysterical! After about two bites from Mommy Maryam decided that she needed her own bowl of ice cream too. Daddy made her a bowl of Cool Whip and ice cream and she ate most of it! After the ice cream she decided for her "nack" she wanted pepperoni. She polished off 6 pieces of pepperoni and then requested a Hershey Bar. I didn't give her a whole Hershey bar because by this time it was almost 10pm. So, she got 4 pieces which is 68 more calories.
Maryam is making HUGE strides in textures. She still prefers the purees and does far better with them than with whole foods that require her to chew first before swallowing. But she is trying so hard. Last night for dinner she wanted a taco SO bad. We gave her a bowl full of taco meat and she ate it all gone! This morning when she woke up she wanted more taco, but settled on pancakes instead.
Its really nice being able to cook for my child. Its even nicer hearing her ask for a particular food, try it and eat it all up! Its amazing. I know its an everyday occurrence for most moms, and it isn't really a big deal to most, but for us its HUGE. On Sunday we're going to try to start potty training. I'd really like for Maryam to be out of diapers before our little guy is born. Wish her luck!
Tomorrow Daddy is taking Maryam to Disneyland. Mommy can't go because my blood pressure has been really high the past week. Hopefully he'll remember the camera and I'll be able to post super cute photos of them enjoying Daddy/Daughter Day!

Maryam has pulled her button out twice this week. I'm thinking she wants to get rid of it as much as we do! We went ahead and replaced the old button with a new one so hopefully that will make it harder for her to pull it out. I know she's only doing it because it bugs her so much. So Mommy has to get on the ball and really start teaching her to take her meds by mouth. I was really hoping her therapist Dawn could help us with this, but its taking Kaiser FOREVER to approve Maryam's OT. I just don't want to do anything wrong that could scar her from ever wanting to take them orally. Thankfully there are only 2 meds in the morning and 5 at night. The real problem I think is going to be the Chinese herb she's supposed to take 30 minutes before each meal, it smells and tastes DISGUSTING! Ha!

Pregnancy News

2009-08-21T22:13:00.001-07:00

Non Maryam related news. I had a peri appointment yesterday. So far, so good. I'm 30w 1d and he's measuring at 30w 5d approximately 3lbs 11ozs and in the 65th percentile. I think its odd that he's not even born yet and we're already comparing him to the rest of the population. We have no real news on his left kidney issue. Only that my doctor thinks its some sort of duplication anomaly. Oh how I love the word anomaly attached to both my pregnancies..... I have to schedule another big ultrasound so that a radiologist, geneticist and urologist can look at both his kidneys and try and diagnose the issue before he's born. My doctor seems to think that he has either two kidneys fused together on the left or he has one kidney that has to ureters draining into one place causing a blockage. The kidney has a kink in the ureter causing it to be HUGE. Its full of amniotic fluid and is currently the same size as his stomach. Nothing will be done until he's born. When he's born the doctors will do a bunch of tests to see where the blockage is, determine the severity and then develop a plan of action for fixing it. From what my doctor says, he's going to need surgery for sure, but we won't know when the surgery will be until they can determine the severity of the damage.
Anyway, it doesn't seem like too big of a deal. At least not compared to all of the issues Maryam had at birth.
I go back on September 2nd at which time we'll schedule my C-Section for sometime in the 38th-39th week. After that appointment I'll be going in once a week until he's born! Wish us luck!!!!

New Big Girl Bed

2009-08-19T16:27:00.000-07:00

Maryam got a new big girl bed from our friend Kelly. She slept in it last night and woke up this morning and was able to get out on her own. She came and got Daddy and told him to come watch TV in her bed with her. Of course he obliged. She has since taken to sitting on her bed to watch movies instead of sitting in her little movie chair. I asked her if she likes her new bed and she said she loves her Mickey bed. Too cute. Today for nap time she went and laid down in her bed and fell asleep like she usually does. So, I guess its safe to say that Maryam is comfortable and happy with her new big girl bed. Yay!

Maryam goes to Dland with her BFF, AGAIN!

2009-08-17T21:30:00.000-07:00

This is a picture of Ian getting in on "the hand holding situation" as he so eloquently put it.

Here is a photo of Anna and Maryam wearing their Minnie Mouse and Daisy Duck matching BFF fuzzy Mickey ears.....priceless.

Why stand in line for Nemo twiddling your thumbs when you can dance to the Disney Channel music band playing in the distance? They danced to each song and clapped at the end....too cute.

This is when you know your mommy plays the Beatles and/or Paul McCartney in the car too much....when your two year old makes the peace sign. Go Anna!!!! She's so very California now.....Berkley here she comes!

Eating update. Maryam actually said tonight in the pool that she wanted to eat some crackers and pointed to her mouth. Daddy asked her to show Mommy where you want them. She turned to me, pointed to her mouth and then said, put them in my tummy. OMG! How amazing is that? Like I said in the last eating update, I THINK she's finally getting it!!!!!! HOORAY!!!

love

2009-08-14T01:46:00.000-07:00

I just noticed that I never put this picture up on the blog. This is from back in May at Charlie Mae's baptism. I love it and had to share.

Eating update

2009-08-12T22:09:00.001-07:00

I REALLY, REALLY, REALLY don't want to jinx how well Maryam has been doing with her eating, so I'm a little afraid to say this.......I THINK she gets it! Maryam has eaten well over 1200 calories a day for almost a week now. She asks for food every couple of hours. And when she gets grumpy and I say, "are you hungry?" she almost always answers yes! I THINK she's starting to understand! Even when we're out and about she asks for food. She has been eating all 3 meals a day like a champ and having snacks in between. She has even taken to eating a bed time snack. Its the weirdest thing in the world for me to be able to ask her what she wants to eat for lunch and have her answer me and then actually eat what she requested.
Our next step is getting her to take all of her meds orally. We need to get this button out because its bugging her rib very much. She is still complaining that her button hurts. It breaks my heart when she's in pain. So, I think if I can get her to take her meds orally and prove that she can maintain and gain weight we can take that sucker out.
Maryam has an occupational therapy assessment tomorrow through Kaiser to prove that she still needs therapy. Hopefully once that goes through we can work on chunkier textures and getting her to drink juices and take her meds. I'm fairly confident she's going to have her button out before her 3rd birthday. The real test is going to be when she gets sick. Keeping her hydrated through pneumonia, bronchitis or asthma flare ups is a difficult task to accomplish even with the button. The next time she gets sick I'm going to try to test her by NOT using her button to hydrate her. We'll see how it goes.
I'm going to shoot off an email to her CHOC feeding team for tips and techniques for getting her to take her meds. Hopefully they'll have some clever ideas.
After that, on to normal toddler learning! Potty training! Yay! One thing at a time though. First she will learn how to eat, chew and swallow. Next she will learn to pee and poop in the potty! Priorities! Ha!

Frida Kahlo?

2009-08-12T22:09:00.000-07:00

Our little painter at work. For any of you who have children with sensory issues you can imagine the shock I felt when I saw Maryam painting her own hand! I've made it a point to paint her hand and make a hand print every time she paints in hopes that it would desensitise her gag and retch reflex. Apparently it has worked!

Here Maryam is painting her own hand and then proceeding to put her own hand print on a piece of paper! She even goes through and pushes each finger down one by one. And the super crazy part is how much paint gets on the paint brush and her other hand. She doesn't ask me to wash it off or beg me to wipe her hands.

Here Maryam is showing off her painted hands. Now if only I could get her to open her eyes when she poses for the camera. Silly girl.

Wall Art

2009-08-12T22:04:00.000-07:00

So, this is what Maryam does when Mommy is sleeping and Daddy is playing around on facebook. She draws on the wall with a pencil. Thankfully it was just a pencil! But hey, there's a first time for everything right?

This is her, "who me?" look. Ah jeez.

GLAMOROUS

2009-08-12T22:00:00.000-07:00

Seriously, Maryam won't leave home without it! She goes to the grocery store with it, she wants to water the plants wearing it and most crazy is she insists on napping with it on.

We have to wait until she's asleep and sneak it off of her! But as soon as she wakes up she finds it and puts it back on again. This girl loves her pink feather boa! Ha!

Disneyland Trip

2009-08-12T17:14:00.000-07:00

We went to Disneyland with the Carnes/McGrorty clan a few weeks ago. We had a great time. We even had a chance to meet up with our friends Jen and Brand and finally meet their punkin Hannah! Hannah was due to be born a day after Maryam's original due date and ended up being born a day late. She is a really super cute little girl and I'm totally lame for having not taken a picture of the two girls together.
In the above picture we have in the 1st row from left to right Charlie Mae, Minnie Mouse, Maryam and Anna. In the top row we have me, Brett, Christi and Ian. What you don't see is Charlie grabbing Minnie Mouse's nose. The worker guy actually threatened to kick her out if we didn't stop her from grabbing Minnie's nose. He was obviously not in a very good mood. This was probably my last trip to Disneyland util after the baby is born. It took days for my blood pressure to come down!

Catching up!

2009-07-31T21:37:00.000-07:00

The last time I updated the blog I was going on and on about a weight check appointment Maryam had where she gained weight! Hooray! Well, that Sunday she woke up barely able to breathe and had a temperature of 104 degrees. So, off to the ER we went at 6am. The ER doc insisted that she had pneumonia and bronchitis. I didn't think that was a proper diagnosis so I took her to see her pediatrician on Monday. It was an upper respiratory infection brought on by a virus. This virus was a doozy. It made her gums bleed, it gave her sores on her tongue, a rash on her torso and a fever. So, as you can imagine, getting her to eat was a REAL challenge.
Her eating has returned, but her drinking has taken a major hit. I have found it virtually impossible to get her to drink her formula. Its killing me. I've bought EVERY flavor of Pediasure on the market. Even the new Berry Cream! Sounds yummy, right? Not so much to Maryam.
She's still eating 3 meals a day and having 2 snacks. She has started requesting more and more foods and she is even starting to eat more solids. I'm not having to puree her foods as much. She has eaten a waffle in little bites, salami, chips, chicken nuggets, ravioli and tonight had meat loaf with her baby BFF Anna.
Kaiser FINALLY sent the occupational therapy request through for approval. Well, kind of. She was approved for another evaluation. I'm hoping that the evaluation gets pushed through fairly quickly so I can get her back in to see Dawn ASAP. I'd really like to get her to transition from purees and soups to more solids. Not to mention getting her to drink her formula again, that would be RAD.

In non Maryam related news, I'm 27w 1d pregnant with our little guy. It seems that since I passed the 25w 2d mark my blood pressure has gotten much better. My new long term goal is 30 weeks. Wish me luck!!!

Great Grams and Maryam

2009-07-31T21:36:00.000-07:00

Here is Grams helping teach Maryam the alphabet using a new book Daddy got her. She FINALLY knows it! Hooray! I goaled her to learn it by the end of the month and it happened! Hooray! Maryam is wearing her new big girl glasses in the photo too. These frames don't have the wrap around temple pieces that her old pair had. And they're blue! She picked them out herself.

Here is a happy Maryam sitting with her Great Grams. Love them both dearly!!!!!!

All dressed up!!!

2009-07-31T21:30:00.000-07:00

Popop Langdon actually bought this dress for Maryam to wear for Easter. It was huge on her then and its still huge on her now. But its awfully pretty!

In the above photo I told her to do a fancy "Ta-da" pose and this is what I got!

In this picture I told her to make a funny face and this is what I got! Ha! Gotta love her!

Weight Gain!!!

2009-07-17T19:14:00.000-07:00

Brett took Maryam in for a weight check today and she has gained 6 ounces in 3 weeks! Hooray! I know that sounds very minimal but its really not. That means that she's going in the right direction. She's been getting nightly pump feeds since her asthma attack. It seems that her lungs took a huge beating during that last bout because she still hasn't fully recovered from it in terms of drinking. Maryam is eating GREAT! She even makes requests for what she wants to eat. But we're back to having a very difficult time getting her to drink her formula. We've tried everything. New flavors, new cups, bribery and rewards. Nothing seems to be getting her to drink her formula.
We spoke to Maryam's doctor again about leaning on Kaiser to get her back in Occupation Feeding therapy. She put the referral through again and told us if we didn't hear anything in 2 weeks to call the outside referral office. Hopefully we can get Maryam back in to see Dawn ASAP. The CHOC clinic wasn't a cure all, but a VERY good step in the right direction with a solid concrete foundation to stand on.
We discovered that Maryam is NOT allergic to bee stings. She was stung a few days back while we were in the pool. Brett pulled the stinger out of her back and the only real noticeable mark was a red ring around where the stinger was. Maryam didn't cry. She whined some, but once we treated it, she didn't bring it up again ever. We didn't tell her she was stung by a bee because we don't want her to be afraid of them. We did tell her to be aware of them though!
I know I've gotten really lazy about updating Maryam's blog. Its not because I don't care, but that being pregnant is exhausting for me. I know that millions of women do it everyday and all I can guess is that some women are better at being pregnant than others.

Sleeping Baby

2009-07-14T14:22:00.000-07:00

If I've said it once, I've said it a million times! Maryam can fall asleep swinging almost anywhere! From 30 degree weather to 95 degree weather. If she's swinging, she's sleeping. Here Maryam fell asleep on the patio swing! It was bright and sunny outside and had to be at least in the mid 90's temperature wise. But do you think that could phase this little sensory baby? Nope! She slept for over an hour. I love her.

Playing with the sprinkler

2009-07-14T14:19:00.000-07:00

This was Maryam's first time playing in a sprinkler. She loved it, of course. Anything having to do with getting wet is usually not a problem.

Don't ya just love this "baby suit"? Its one of my favorites.

Pretty profile.

Monkey Love

2009-07-14T14:16:00.000-07:00

Here is a series of picture of Maryam hugging the Gorilla statues at the SD Zoo.

Fireworks

2009-07-14T14:15:00.000-07:00

I couldn't get any photos of the fireworks, but Maryam loved them! She kept yelling out the color of each firework that exploded in the sky. She had a great day!

4th of July water fun!

2009-07-14T14:14:00.000-07:00

Here is the best picture I got of Maryam and Charlie in their new Patriotic bathing suits Nana Haston got them. Aren't they adorable?

They spent time in the pool then the little ones wanted to play on the water table instead. Maryam had all her cousins around! Brande's boys came over for a swim! So, in these picture we have Maryam, Charlie and Collin.

This is just a cutie picture of Maryam in her suit. ADORABLE!

Backyard hazards and fun

2009-07-14T14:11:00.000-07:00

The hazard would be pushing your baby buggy around while looking down at the baby. One might run into a tree. Or in Maryam's case, one would definitely run into a tree. Can you see the big scratch under her right eye? Geez.
The fun would be the water table! The girls enjoy this water table more than words can describe! They spend hours pouring water on each other, themselves, and anyone who dares walk by. And its not a waste of water because they're cooling off in the 115 degree heat!

Wii Boxing

2009-07-14T14:07:00.000-07:00

It was a good fight.

Both girls were boxing and jumping around having a great time.

But the winner was Maryam! She even has her winner's pose down!

Sea World Bay of Play

2009-06-30T23:15:00.000-07:00

Yet another sprinkler park. This one is at the Sea World Bay of Play. Maryam LOVES getting wet. I would have taken more pictures, but silly Mommy forgot to charge the battery. Ugh, I hate when I do that!

We had a great day! We spent the day with Maryam's cousins Trip, Paddy and Collin, and their neighbor friends Brooke and Jake. Later in the evening our friends Jennifer and Mike came along and watched Maryam dance the night away at the Shamu Rocks show. She could not get enough of the music.

After that we watched the fire works show and then started out 2.5 hour drive home. We didn't get home until after 1am. Maryam didn't go back to sleep until after 3am. The day was great, the night SUCKED! Ha!
Maryam ate really well while we were out. It was the second day of our calorie count that the CHOC feeding team asked us to do. She got in just above her required 1200 calories, so she didn't require a tube feeding that night. Actually, Maryam went a whole week without a tube feeding! From Sunday to Sunday she took in enough calories daily to not require a tube feeding! BUT Saturday night Maryam started getting an asthma flair up. By Monday she was so bad that we had to take her in for steroids. I think the difficulty breathing has made it significantly harder for her to eat or drink, so we started tube feeds again. For the record, I do not look at this as a set back at all. Anyone who has ever had a preemie knows that the roller coaster ride is a long one. It starts at birth and here we are nearly 3 years later and we're still not off! I just see it as it is. Maryam has made HUGE strides in her life, eating seems to be her last obstacle. We didn't think that Maryam would be completely off of her tube so soon. In fact, Brett and I have been talking about giving her tube feedings a couple times a week in addition to her oral feedings just to keep her weight up.
We're very proud of the fact that Maryam was able to go an entire week without a tube feeding! That's amazing in our eyes. She accomplished something that we didn't think she'd be able to accomplish for years to come. Unfortunately her respiratory condition sometimes gets nasty and it affects the rest of her health, eating included. There was a time when just trying to drink from a bottle made her turn blue and limp because she wouldn't get enough oxygen. So, honestly, this isn't a big surprise. Like I said, it is what it is!
She's doing much better with her breathing today. Steroids affect her quickly. Hopefully within a few days, she'll get back up to where she was last week and we can start weaning the tube more.

In non-Maryam news, the reason we were in San Diego was for me to go see my high risk doctor. Everything looks fine! I'm 22w 5d and my BP is under control as well as my heart burn. All the meds I'm on are working. So, regardless of what some people think and some really tasteless jokes about me being only 3 weeks away, there is no reason to believe I can't carry this one full term! Say your prayers!!!

Maryam "helping" Daddy

2009-06-30T22:59:00.000-07:00

Daddy was changing the door knob on the music room door and Maryam just had to help.

She totally understands how screws and screw drivers work, but her coordination isn't very good.

But she had a great time!

Maryam's Tree

2009-06-30T22:56:00.000-07:00

Papa and Maryam planted an Olive Tree. She helped put the soil in the pot.

Broke up the soil.

Put the tree in the pot and water it.

Then voila, Papa and Maryam's tree! She had a GREAT time and got REALLY dirty!

Pictures from Disneyland

2009-06-30T22:48:00.000-07:00

Here are some pictures of Maryam playing in the sprinkler park in the "Its a Bug's Life" area of Disney's California Adventure. Maryam LOVES it.

Maryam wanted to take Daddy to Dland for Father's Day. We took him the Thursday before the holiday so that we wouldn't be there on the weekend. There were still millions of people there, but Maryam had a blast!

Woohoo!!!

2009-06-22T23:05:00.001-07:00

Sorry there aren't any photos, I'm having technical difficulties with the computer. BUT I wanted to report HUGE news. Wait, let me go back in time first.
On Friday Robyn from the CHOC feeding team called to check on Maryam's progress. She wanted to know things like, was Maryam's pediatrician happy with her weight, had she lost or gained, how was OT going? That sort of thing. I told her that Maryam had only lost 3 ozs, we still haven't received authorisation for more OT and Maryam hasn't seen her pediatrician because she hasn't been sick. I did go on to tell her that the RN in the office says Maryam looks great.
I explained to Robyn that I'm still having trouble getting Maryam to drink Pediasure. I told her that on a good day she'll drink 8 ozs and on a bad day only 4. Robyn told me that Maryam needs 18 ozs of fluid a day! Yikes! Next Robyn asked me to do a 3 day calorie count this week.
Over the weekend I worked really hard on getting Maryam to drink more Pediasure. The most she drank on either day was 8 ozs. I limited her water, but she begged and I gave in. She probably drank twice the amount of water as she did formula, ugh. That is terribly frustrating!
That brings is to today. Today I was going to stand firm on my no water rule. If Maryam wanted a drink, she could drink "pink milk". At breakfast Maryam ate half a serving of high Cal pancakes and drank 2 ozs of Pediasure! Off to a good start! At morning snack she drank another ounce! Woohoo! Then at lunch she wanted soup. I gave her Campbell's Split Pea soup with Ham and Bacon and prepared it with Half whole milk and half water! She ended up eating a whole cup of soup which was 360 cals! AND she drank another ounce of formula.
For her afternoon snack Maryam ate a snack bag of Lay's chips and drank 2ozs of water. At dinner she ate 1/4 cup of rice with butter and drank 4.5ozs of Pediasure!!! At 9pm tonight Maryam asked for water, I said no and offered another 4.5 ozs of Pediasure and she drank it all! I asked her if she wanted more and she said yes! I poured 2 more ounces and she drank it all down. That means Maryam drank 14.5 ozs of Pediasure today! And that was fortified with Duocal! That means she got another 50% of calories! Woohoo! When I did a calorie count I counted nearly 1400 calories for the day!
Ok, so today, June 22, 2009 Maryam was 100% orally fed for the first time in her entire life. Words cannot describe how happy I am right now. Words cannot describe how grateful I am to the wonderful feeding team at CHOC. I'm beaming with pride and joy right now.
Thank you everyone for your love, prayers and support for our little miracle baby. She amazes us more and more everyday.
Sent from my Verizon Wireless BlackBerry

Maryam's 1st Haircut!!!

2009-06-15T20:24:00.000-07:00

BEFORE.....

Getting those bangs taken care of.

Maryam's bangs were out of control because she pulled her hair out and they just started growing back. Now that the bald spot is all filled in, it was much easier to get the bangs all shaped up.

AFTER! Maryam posing with Miss Taylor, doesn't her hair look much more organized? It was just out of control!!

More haircut pictures

2009-06-15T20:22:00.000-07:00

Right before Miss Taylor started cutting Maryam's hair. As you can see, she was a little nervous.

Checking herself out in the mirror, Maryam leaned in to get a better view.

In this picture Taylor is cutting the length off. Maryam really needed her hair evened out. Parts of it seem to grow faster than other parts.

Maryam and Charlie Mae

2009-06-14T20:35:00.000-07:00

Playing dress up

2009-06-14T20:34:00.000-07:00

Maryam wanted to wear our CHOC sweatshirt. She thought it was hysterical walking around in this huge, comfy shirt. So, we took pictures!

Mashed potatoes face

2009-06-14T20:32:00.000-07:00

Thank goodness for disposable bibs!

Messy Maryam eating.

Peek-A-Boo and mashed potatoes, always a fun combination.

Sea World photos

2009-06-14T20:30:00.000-07:00

Here is Maryam meeting Pete the Penguin at Sea World San Diego. We got there, I fed her lunch and then I took off for my high risk appointment. I left Maryam there with Charlie Mae and Auntie Sarah.

Here are a few cutie pictures of Charlie Mae and Maryam. Maryam is still a little taller than Charlie, but Charlie is bigger all around. She out ways her and wears larger clothes. Aren't they too cute together?

Pictures

2009-06-14T20:27:00.000-07:00

Here is Maryam playing doctor on Mickey Mouse. You has a Band Aid on his right leg from where she had given him a shot. That's also why he has a sticker on his chest. You think she's had a few too many shots? Hmmmm. In the above photo she's checking his mouth for an "ear infection". She's definitely been to the doctor a few too many times!!!!! He pediatrician always checks her throat when she has an ear infection. Bizarre how good her memory is.

Here Maryam is taking a splinter out of Mickey's other knee. Too cute.

In the photo here Maryam is taking Mickey's temperature. She has the thermometer under his arm like we do when we check her temp. Too cute.

And then in this picture Marya mis playing Wii Baseball. She's totally and completely addicted to Wii. She wakes up every morning asking to watch "Your Baby Can Read" and then immediately after that is over, "Wii pease."

Dinner story

2009-06-12T19:32:00.001-07:00

Yaya and Mommy took Maryam to Denny's for dinner tonight. She wanted to sit in a booster chair instead of a high chair. I looked at her and thought, wow my big girl is making decisions for herself! Then the waiter put the menus on the table. Maryam flipped through the kid's menu and first picked out a Jr. Grand Slam and then quickly changed her mind to the picture of mashed potatoes and gravy.
She ate nearly the whole plate of potatoes with gravy then the whole side dish of extra gravy! It was amazing because she would tell me when her mouth was empty so she could have another bite. She was in total control of her own meal. So, she picked her seat, picked her meal and picked when she was ready for each bite! She is becoming so independent. I'm very proud of her.
Sent from my Verizon Wireless BlackBerry

Playing catch up....

2009-06-12T10:27:00.000-07:00

So, Maryam has been eating really well. We've been able to take her out places and have her eat! Thursday night we took her to Bistro 29 and she ate a plate full of mashed potatoes. They didn't have gravy which drove her insane!!! But she managed. Friday night we took her to the 29 Palms Car Show and Street Fair and she didn't do as well. She refused to eat anything! All she wanted to do was run around. She wouldn't drink her Pediasure or even eat a chip, so we had to leave early to try to get her to eat at home. By the time we got her home she was so aggravated that all she wanted to do was go to sleep.
The weekend was much better. Maryam ate all of her meals and is even doing better at trying new flavors. She's been doing wonderfully with any and all soups. She likes to add pepper and usually adds too much, but she still eats it all gone. Breakfast is still her most challenging meal. I have found that if I give her the Ensure pudding in the morning, she tends to eat it all, vs giving her pancakes or waffles where she only takes a few bites and gives up. At lunch she's been eating a whole cup of soup or a whole hot dog. Its pretty cool being able to watch her eat all of her food. She has a total feeling of pride and accomplishment.
At dinner I've been able to puree pretty much whatever we're eating and she's been doing really well with it. If we have a pasta, I just puree it with extra pasta sauce, if we have a meat, I add gravy, I'm learning the tricks to making it taste better. And if she doesn't like something, which she tells me immediately, I'll make her a soup or let her pick what she wants.
Maryam is loving snack time. I've been letting her sit in her favorite chair and watch her favorite TV show or read her favorite book and she will eat an entire bag of chips! Its fascinating to watch her chew and swallow, something she wasn't able to do before we went into the CHOC program. Right now our biggest challenge is getting her to drink her Pediasure. Its killing me. Last night I had to bribe her to drink her Pediasure by promising that if she finished her 3 ounces that I'd give her water. Until I said the magical word water, she wouldn't go anywhere near her Honey Bear Cup filled with "pink milk." Ugh. She needs those calories!!!!

In non-Maryam news, I had another high risk appointment on Tuesday where I was put on blood pressure medicine. I'm pretty bummed that I'm already having blood pressure problems this early in my pregnancy. I'm only 20 weeks! Ugh. So, if it doesn't go down in the next few weeks I'll be put on bed rest. How does a mommy of a toddler go on bed rest? I'll be completely dependant on Brett, my parents and my Maries. I just hope Maryam understands. I don't want her getting mad or disappointed that I can't play with her as much. I feel like I'm choosing the new baby over her. But I know I'm not. Its just a crappy situation to have to be in.

Great eating day!

2009-06-03T21:00:00.001-07:00

For breakfast Maryam had a pureed PB&J from the high calorie recipe book that we got from the dietitians at CHOC. She ate about 1/2c of it which is about 600 cals! CRAZY! For lunch Maryam ate "hot dog surprise" which is another 300 cals or so. For dinner she wanted spaghetti like the rest of us. So I pureed some spaghetti for her, but then she changed her mind. She ate about 7 bites, VERY SLOWLY and then asked for soup. I gave her a whole cup of cream of chicken soup (8 ozs) and she ate all of it in under 20 minutes! How incredibly RAD is that? AND she drank a whole bottle of strawberry pediasure today mixed with DuoCal. That means that she had another 355 cals or so! HOORAY!!!! I couldn't be more pleased.
And for those of you who read yesterday's post, Maryam did like meatloaf! I mixed it with brown gravy and pureed it to a pasty consistency and she actually asked for more! Kelly does make some yummy meatloaf!

We have an eating Maryam!!!!!

2009-06-02T19:01:00.000-07:00

Here is a picture of Baby BFF's Maryam and Anna Banana sharing a cookie and a chair. Its nice when they share things, usually what I hear is "MINE! SHARE!!!!"

This is dirt baby turned mud baby! Daddy was rinsing something off in the backyard and Maryam took the opportunity to take a mud bath in the big puddle that was left behind. Her pretty white sandals aren't so pretty or white anymore.

Here is a photo of Daddy helping Maryam jump into the puddle. When you can't beat 'em, join 'em! Right?

Yesterday Maryam ate really well! For breakfast she ate a few ounces of pureed cinnamon roll and Anna had some solid cinnamon roll. I sent a text to Chrissy telling her that "my kid ate more than your kid for breakfast!" It felt kind of nice to be able to brag! Ha! For lunch Maryam asked for a hot dog and so she had a hot dog. She ate almost all of it! I think I've already mentioned that the recipe calls for one hot dog and 1/4 cup of nacho cheese, so the total amount of food is 1/2c prepared. Not bad for Maryam! For her afternoon snack she ate about 15 BBQ Lay's chips, YUMMY! And for dinner she ate a ton of spaghetti and drank over 3 ounces of strawberry Pediasure. If anyone knows anyone who works for Pediasure and wants to kick down a few cases of strawberry, give them my number! Ha! When she got tired of spaghetti we added more sauce and the sauce made it more appealing to her. We learned that trick with mashed potatoes and gravy. When the potatoes weren't enough anymore, ADD GRAVY! YUM.
Today Maryam's eating was even better than yesterday! I'm not supposed to measure how much food she eats, but I got kind of nervous on Friday and Saturday when her intake seemed rather low compared to normal. So today I measured some stuff. I didn't measure how much she ate, I only measured how much I served. I guessed the amount of which she ate based on how much was left after her meals. For example, I measured that I gave Maryam 1/3c of cinnamon roll for breakfast today (pureed) and she ate it all! Woohoo! At lunch I got super ambitious and measured out a full cup (8ozs) of cream of chicken soup and guess what? SHE ATE IT ALL! YES! Maryam ate 1 full cup of cream of chicken soup! How crazy rad is that? It took Yaya and Papa celebrating the last 6 spoon fulls to get her to finish, but she did!! Then for her afternoon snack she ate 10 SUPER HUGE Cheetos Cheese Puffs and drank 3 ozs of strawberry Pediasure! HOORAY! Tonight we're going to try pureed meatloaf with gravy, wish us luck!

Flying babies!

2009-05-30T22:55:00.000-07:00

These photos are of Brett throwing the girls to Uncle Scott. Maryam kept saying, "more fly, more fly" or "again fly". In other words, she did not want to stop. I only took her out of the pool because she was shivering!

Here is Charlie flying through the air. Both girls had a blast!

New Hula "baby suits"

2009-05-30T22:53:00.000-07:00

Here are Charlie and Maryam in their matching hula bathing suits. Aren't they just too cute? Maryam doesn't say bathing suit, she says "baby suit" which I think is adorable.

You can't tell but in this picture Maryam is running around dancing telling Charlie to "do it".

Charlie posing!

Maryam waving hi!

Running the hall

2009-05-30T22:50:00.000-07:00

Maryam was running back and forth down the hallway saying "naked baby!"

Such a cutie!

Maryam had a good eating day today. For breakfast she ate almost a whole container of Ensure pudding in only 20 minutes. Of course, she didn't drink a drop of Pediasure. She's killing me with her stubbornness and drinking. Its like the only thing she wants to drink is water, which of course has no freaking calories in it. At lunch she ate almost a whole hot dog or as Brett calls it, Hot dog Surprise! Its the high calorie puree hot dog recipe which calls for one hot dog and 1/4 cup of nacho cheese sauce. YUM. And for dinner she ate one red potato pureed with whole milk covered in brown gravy. Don't judge! At least she's eating!

Funny Maryam story, last night we were walking Grams and the rest of the family out to their car when I asked Maryam to point out the moon. She points to the moon then said, "oh no, moon broken." It was a half moon. Silly Maryam, she's so funny.

Pictures

2009-05-30T10:20:00.000-07:00

Maryam and Charlie on the train at Disneyland.

The family in line for "Its a Small World".

Pictures

2009-05-30T10:17:00.000-07:00

Collin and Maryam on a turtle at the Santa Anna Zoo.

Collin, Paddy, Trip, Daddy and Maryam on Katie the elephant!

Maryam and Mommy on the panda.

The cousins monkeying around on a monkey statue.

More pictures

2009-05-30T10:12:00.000-07:00

-Mommy- "Hey Maryam, are you pooping?"

-Maryam- "Yes."

Pictures

2009-05-30T10:10:00.000-07:00

For the record.....I DO NOT PUT MARYAM'S HAT ON BACKWARDS, SHE TURNS IT AROUND.

I said to her that she looked "gangsta, straight bangin'." And she looked at her picture of herself and said "bangin' Mommy!" Note to self, do not talk to Maryam about being a thug.

Charlie and Maryam.

More pictures

2009-05-30T09:33:00.000-07:00

Maryam enjoyed playing Wii in the playroom at CHOC. Funny thing is, she never enjoyed playing or watching us play at home, only in the hospital. In this picture she's playing fishing!

Here is Maryam with Henry. CHOC is big on pet therapy. Volunteers walk around with their volunteer therapy dogs from room to room delighting the hearts of little children. Henry LOVED Maryam's room. When he laid down on her carpet, he didn't want to get up, which was fine with Maryam!

Pictures of a feeding session

2009-05-30T09:30:00.000-07:00

Here is one of Maryam's SLP's Jennifer. This was an outing during an afternoon snack. As many of you know, Maryam LOVES to run. Jennifer used this to get her to drink more Pediasure! She'd get to run to the next crack in the sidewalk and then take 3 drinks, then start over again.

When Maryam didn't take a big enough drink she'd drink some more.

Here was the finish line, rock throwing. Maryam LOVES to throw rocks. If she drank enough, she got to go throw rocks. Learning by bribery. Hey! Whatever works, right?

Pictures!!!

2009-05-30T09:26:00.000-07:00

Maryam hugging the Pablo balloon that Daddy brought her.

Maryam enjoying "flying".

Maryam climbing up Daddy.

Maryam watching the demolition. Behind this fence used to stand a parking garage. Maryam enjoyed peeking through the fence to watch the destruction.

CHOC Outpatient Day 2

2009-05-28T11:00:00.001-07:00

Day 2 was a bit iffy. She did really bad at breakfast but then did well at lunch. She took a nap during her 1st snack time but then ate like a champ for her afternoon snack.
We took her to Dland in the afternoon. We let her choose between clam chowder and beans and rice for dinner. She chose Mexican. She ate a ton of rice (a ton for her) but refused to even try the beans. She kills me with her stubborness.
After dinner we took her on the Buzz Lightyear ride to shoot laser guns. She later started saying lady bug ride and I couldn't figure out what the heck she was talking about. Brett bought her a little laser gun and she kept saying lady bug and pointing it. This morning she started shooting her gun and asking for lady bug ride. I think she heard lady bug instead of laser gun and yet to be able to distinguish the difference! Ha!
Oh in case any of you were wondering where we're staying, we're at The Ronald McDonald House or as Maryam calls it "Rocco Donald"! CHOC has a shuttle that we can call to come get is to take us to her therapy appointments. The van is really cute! Its decorated with hand prints of former patients! Maryam took one look at it and said "baby paw print car"! So, we take the baby paw print car to and from Rocco Donald's House a few times a day. Later we plan on taking her back to shoot lady bugs at the house of Disney. My silly baby.
Sent from my Verizon Wireless BlackBerry

Back in OC

2009-05-26T21:32:00.001-07:00

We're back in Orange County after a long weekend at home. Saturday Maryam enjoyed eating and drinking for a crowd. She even cheered for herself when she finished the contents of her Honey Bear Cup. I learned a few basic breakfastn and lunch recipes from the High Calorie cook book the dietitians gave me. One of which was a pureed hot dog! Crazy, huh?
One trend that I noticed over the weekend was that on days Maryam drank well she ate poorly and on days she ate well she drank poorly. I have to figure out how to make her eat and drink well on the same day. But if I knew that I could probably get a job on the feeding team!
Maryam had therapy today with wonderful Hemma. Hemma was pleasantly surprised by how well Maryam took a bite, chewed it and swallowed it down. I guess watching what she taught Maryam to do made her happy. I could see her beaming with pride. And Maryam drank like a champ! It was a great session.
I know i've been promising photos and have yet to come through. My apologies. Our schedule is nuts! If you have a minute click on Christi's Blog on the right and you can see some photos from Saturday.
In non-Maryam related news, Brett and I are happy to report that welre having a boy!
Sent from my Verizon Wireless BlackBerry

We're home!!!!!!

2009-05-23T22:01:00.000-07:00

The meeting yesterday was great! We found out that Maryam hit her goal! Hooray! She was admitted to the program 100% tube fed and came home only 35% tube fed! How amazing is that? Maryam's therapists are amazing. She had two SLP's and two OT's, all of which are amazing people. They were so very patient with her and loved her and she loved them! She hugged them when she saw them!!!!! They each had a unique way of dealing with and teaching her how to coordinate her swallow. I couldn't be happier. I have the utmost respect for them all.
The rest of the team was amazing too. It was pretty obvious that Maryam won them over from the beginning. I'm sure there were days where her therapists wanted to throw her through a wall, but they never showed it. I can't imagine how she couldn't possibly be their hardest patient. On our first day there Dr. Katz said that "today was the first day of the rest of Maryam's life" and he wasn't kidding. This program has forever changed her life and our life and we couldn't be more grateful. How do you say thank you and show appreciation for that kind of gift? I really don't know. I feel like the words "Thank You" simply aren't enough, but I guess its the first place to start.
IF any of you are reading this, THANK YOU. I hope you know how much you have touched our hearts and changed our lives. Because of all of you, we will never be the same. Because of you, our daughter eats. Because of you, we've been able to experience what its like for a parent to feed and nourish their child. I got to go food shopping for my daughter!!!!! Something most parents take for granted and probably don't even enjoy. Thank you. You will forever be in our hearts, prayers and thoughts. Thank you.

CHOC day 18

2009-05-21T23:52:00.000-07:00

I'm relieved to report that we get to go home! I know I said I didn't care either way, but living in a hospital sucks! Don't get me wrong, this place is great, they love Maryam, they waved the "no running rule" for her, the food isn't bad and her room is comfortable, but I'd love to sleep in my own bed. I'd love to spend some more time outside. And I'd LOVE to take a shower in a non-kid sized bathtub/shower. Besides, with the holiday weekend Maryam wouldn't have any therapy for 3 days straight, what's the point? We're coming back on Tuesday for 2 therapy sessions a day for 3 days. Which would only be 1 less appointment a day than inpatient. I'm perfectly pleased. And, this way, we can go home and fight the good fight at home and come back and tell them how it went and seek advice. I'm sure we're going to run into a few speed bumps at home, it will be great to have experts to lean on to help us get over them.
So, we found out today that Maryam hit her calorie goal for Tuesday too! HOORAY! And I'm pretty sure she ate better yesterday than she did on Tuesday, so I'm confident that she hit her calorie goal for Wednesday too. We did have a hang up with the feeding pump. I guess the kitchen measured the formula wrong and consequently Maryam got 75 less calories for 2 days straight than she was supposed to. I'm glad I caught it when I did, or who knows what would have happened. When every calorie counts, you want to make sure she gets every calorie!!!!
Tomorrow we have our meeting to find out if Maryam hit her goals. I really hope that she did. My most ambitious goal for her coming into the clinic was for her to be able to go home having only one bolus a day and that be at night when she's asleep. I've been working very hard to explain to her that "big girls don't use a tube to eat, they use their mouth, like you've been doing." And "the tube is only for medicine now, remember?" And that sort of thing. She has only asked for her tube 2 or3 times since we've been here, I'd love to keep it that way.
I'll try to blog tomorrow after the meeting! Wish us luck!!!
As for pictures, I'm going to have to post them once we get home. I don't have a strong enough connection to get these posts to upload without photos, trying with photos would be a complete waste of time.

CHOC days 15, 16 & 17

2009-05-20T21:45:00.000-07:00

So, all I can think is that we "broke" Maryam on Sunday! Because starting first thing Monday morning she started eating! And by eating, I mean, EATING! She started taking in anywhere from 4 to 6 ounces at any given meal. Crazy! The dietitian told me today that Maryam actually hit her calorie goal on Monday! How GREAT is that? That means she took in 1200 calories! Woohoo!!! I'll find out tomorrow how she did yesterday and I'll probably find out Friday how she did today and Thursday!
Yesterday Melina came to lunch with an open cup. She told me that the therapists got together to try to figure out how to get Maryam to stop blocking the straw with her tongue and they decided to try an open cup again. They did this on the first week too and it wasn't successful. The plan is to fill the cup up with 10 to 15mls at a time and let Maryam see herself finish. Once we hoot and holler and tell her how wonderful she's doing she might gain momentum. Plus, she can't block with an open cup.
The first few meals the open cup worked like a charm, but all day today she didn't drink ANYTHING! At lunch she ate 5 ounces of food and drank 0! At dinner today I decided to go back to Honey Bear Cup to see if I can get some liquid into her and she drank 50mls. At snack she took in another 20mls, so obviously we made her thirsty!
We didn't hear today whether we'll have to stay a 4th week, I'm going to assume that we'll hear tomorrow. Frankly, I don't care either way. I'm here for her, so if we have to stay longer than so be it.

CHOC days 12, 13 & 14

2009-05-18T09:48:00.000-07:00

Friday's meeting had a different tone than the week before. I don't know what that means exactly, because neither Brett or I could put our finger on the difference. Disappointment maybe? Perplexity maybe? There is talk of having us stay a 4th week. The team has already received tentative approval from Kaiser and now the decision has to be made whether a 4th week would be beneficial to Maryam inpatient or out patient. I see both sides of the coin and am trying to stay out of the decision making process and leave it up to the experts. We'll know on Wednesday whether we stay or go.
They're trying to figure out if Maryam has learned all she can learn behaviorally or not, and if the stalemate in her progress is all age appropriate cognitive understanding. If it turns out that her issues aren't behavior anymore, which I'm starting to think is the case, then staying another week won't really benefit her any.
Saturday Maryam got a 4 hour pass to the leave the hospital! We took her to the Santa Ana Zoo! She got to hang out with her cousins, play on a playground, ride and elephant, run around and see lots of animals. She had a great time! She ate 6 pieces of pop corn and drank about an ounce of Pediasure. It was a good day.
Sunday Maryam got a 6 hour pass to leave the hospital! We took her to Disneyland. BIG mistake. She pooped out after only a few rides. I think it was a combination of exhaustion, heat and hunger. She started crying around 1:30 and didn't stop until around 5:30! We got back to the hospital at 2:30 because we didn't want her to be miserable. We thought bringing her back would help, but she just laid in bed crying. It was horrible. The doctor examined her but couldn't find anything wrong with her.
When she was all done crying she sat up and told me about her day! It was kind of funny. She ate a good dinner, and a bed time snack and went to sleep at her normal time!

CHOC days 9, 10 & 11

2009-05-14T21:58:00.001-07:00

Sorry that I haven't been posting daily, but by the end of the night Mommy is pretty tired!
I have only good news to report. Maryam is still loving being here. She really likes her therapists and her therapy sessions. They all have gained her trust and have figured out ways to make each session more productive than the last.
Today Jamie took Maryam back outside to the gazebo for a snack. Its all Maryam talked about for the rest of the night! Yesterday Maryam nearly took in 1200 calories! She almost hit her daily goal! Hooray!
We got news today that some of the members of the team are thinking a 4th week may be beneficial to Maryam's long term goal. Ideally Maryam will no longer need her G-tube within a year from now. That's leaps and bounds ahead of my goal! I want her button gone by the time she goes to kindergarten, but if it can come out sooner you won't hear any objections from me!
I'll post more tomorrow after the team meeting. But I want everyone to know that Maryam is happy and thriving! I asked her today if she wants to go home and she said "no thanks!" I don't blame her, everyone is amazing here. They all "get" her.
Thanks to all of you who have helped us out by donating to the "pay for CHOC fund". And as always, thank you everyone for keeping Maryam in your prayers.
Sent from my Verizon Wireless BlackBerry

CHOC days 7 & 8

2009-05-12T17:02:00.001-07:00

Happy belated Mother's Day to all the mommies in our lives. I hope you each got to enjoy your day the way you chose to. I spent the day with Brett and Maryam in the one place in the world that I've been dreaming of. Being able to get Maryam into this program is a dream come true. Everyone has been amazing! They all understand how I feel, how Brett feels, and more importantly, how Maryam feels. Its nice being around people who understand and can explain and help me aid Maryam's sensory issues. Its nice having an answer to every feeding question I've ever asked.
We're very fortunate to be here and I realize it more and more daily. Today Maryam's team social worker told me that they meet with a prospective client every Tuesday morning. I did a bit of math in my head. If the program has only been around 5 years and they've only seen about 28 patients they're averaging less than 6 patients a year! We're amazingly fortunate to have been accepted. Obviously they saw something in Maryam that made them think they could help her and they have!
Less than 3 weeks ago Maryam was 100% tube fed, today she's taking in anywhere from 10 ozs to 20 ozs of food and formula a day! Maryam actually hugs her therapists when she sees them!
Yesterday her SLP Jennifer took her to a little rose garden to have her snack in a gazebo. She loved being outside! And her OT Jamie let her have lunch in the Sensory Room staring at the ball out as motivation! And another OT Melina put whipped cream in Maryam's strawberry Pediasure and made an irresistible milk shake! And one of her SLP's Hemma made such an impression that every new person Maryam met that day was "Hemma"!
Maryam still enjoys being here. She watches the big kids play Mario Kart on Wii, she has been painting daily, and she is obsessed with air hockey. She has started asking for food like mashed potatoes, cookies, and spaghetti. And every Tuesday, Thursday, and Sunday evenings there is a live radio broadcast from the lobby (Lolipop Radio) where she runs around dancing with other children. Every time we get off of the elevator on the lobby floor she starts pointing and saying "dance mommy, dance!"
Well, I think that catches you all up! If anybody out there has any questions about anything comment or email me.

Sent from my Verizon Wireless BlackBerry

CHOC day 6

2009-05-09T16:17:00.000-07:00

Last night was particularly rough. I'm not quite sure what is going on with Maryam in her sleep. It seems that about 3 hours after she goes to sleep at night she starts having these fits in her sleep. She starts whining, moaning and crying and then starts pulling her hair out. The weird part is, when she's pulling her hair she's not whining, moaning or crying anymore. This went on for a couple of hours last night. The weighted blanket didn't seem to do anything for her. She just tried kicking it off and when she couldn't she got more agitated. I talked to Jamie, one of Maryam's OT's about it this morning and she suggested trying tighter pajamas. She wonders if the looser material just touching her skin is driving her nuts. So tonight I'm going to try tighter pajamas. I did end up resorting to brushing her exposed skin last night in her sleep. It did seem to calm her a lot which really makes me believe that she is genuinly seeking stimulation in her sleep. Its pretty freaking heart breaking that she is seeking so much stimulation that she resorts to pulling her hair out though. Ugh.
We tried her on the new 1.5 cal/ml formula last night and she didn't have any tolerance issues with it. She didn't move a muscle until about an hour and a half after the feeding was complete.
Last night dinner went well. She ate 2 ounces of pureed spaghetti, 2 ounces of chocolate Ensure pudding and 4 ounces of whipped cream. She is still not wanting to drink much of her Pediasure which is driving me nuts. She has to be thirsty, right? I stopped giving her the allowed 4 ounces of water with the hopes that it would drive her to drink more of the Pediasure, but so far that isn't the case.

This morning she ate and got to play in the ball pool. I think that is her new favorite thing in the whole wide world. This afternoon after a pretty good lunch, Daddy took her out for a stroll while Mommy tried getting a nap. After her 3pm snack she went into the play room where Daddy taught her how to play air hockey! She does the cutest little celebration when someone scores, she doesn't care who!

CHOC day 5

2009-05-08T16:47:00.000-07:00

Here is Maryam with the Nuk brush. I ask Maryam to stick out her tongue and then I brush forward. As her tongue comes further and further out I start the brushing further and further back. Its to help her learn that food can go further back on her tongue. Right now she mostly uses the front of her tongue for moving her food around. I also move it from center to the right and from center to the left. This helps her learn to use the sides of her mouth for moving food around as well. Here is Maryam with the Z-vibe in her mouth. What I'm doing here, is sticking the the vibrating tip in the side of her mouth and having her bite down. This is to help show her that she can use her molars from chewing. Right now she's still using her front teeth for most of her chewing. I know it looks like she' snot enjoying it, but she was laughing the whole time I did it this morning. I do both of these things before Maryam eats.
We had our weekly team meeting today. Fortunately Maryam wasn't there. Her Child Life helper Peggy played with her while we were in the meeting. We were told someone would come get us from our room around 1:30-1:35 and when there was no one here at 1:40 I thought they were coming to tell me that we're kicked out from lack of progress. I'm happy to say that I was wrong. Maryam is off to a slow start volume wise but we're all happy with her progress in textures and tastes. She's eating a lot more variety of foods than she did before entering the clinic. And even throughout the week she's tolerating some textures at the end of the week that she wouldn't eat at the beginning of the week. They're happy with how easily she has adapted to being here and that she hasn't had any toddler meltdowns. They're happy that she's responding to their reward therapy and their different techniques for distracting her and getting her to complete bites and swallows.
As far as volume, Maryam has met 70% of weekly goal. They wanted her to be able to take in 1200 cals/day including the 300 cals she's getting in her nightly bolus. Right now she's averaging about 850 cals/day. Which means she's falling about 350 cals short orally. A temporary solution is to increase her bolus to 1.5 cals/ml and keep the mls at 300. So, instead of getting 300 cals at night, she'll be getting 450. Right now she's getting about 1/3 of her cals from her bolus, 1/3 of her cals from the fortified foods (Ensure pudding, Pediasure and the Boost Breeze juice) and 1/3 of her cals from regular food. So, she is pretty balanced as far as her intake.
We're switching up a few things that might help with her volume. We're going to start incorporating different flavors of the Pediasure so she's not just drinking Vanilla all the time. We're going to dc the Boost Breeze since she's not a fan at all. I'm also going to cut back on the water so she's thirstier when its snack and meal times so that she's more inclined to drink her Pediasure. We're also adding a bedtime snack like a cookie and milk. She asked for "a cookie in my mouth" last night before bed and when I told the team, they couldn't help but give her one. Last night at dinner she asked for pizza! Random.
Volume wise, today hasn't been good at all. Maryam's having a bad day, I think. The resident on duty seems to think she has an upper respiratory infection, but until she starts acting like it, they're going to ignore it and not tell her she's sick. Also, they want Maryam pooping everyday so last night they started giving her Miralax nightly until she starts pooping on a daily basis. They think this will help keep her comfortable and maybe even want to eat more.
Also they're going to start Maryam back on the Pariactin. We've all decided that it wasn't the Pariactin causing the pulling especially since she's still doing it and she's only had 1 dose in a week. They conclusion is that Maryam is just seeking stimulation. My plan for tonight is to try a weighted blanket and see if that gives her enough stimulation to prevent her from pulling. If it works, I'm buying one. If it doesn't, at least I know.
Ruth McCarty the traditional Chinese medicine doctor (who isn't Chinese, by the way) came to visit Maryam today. She did a super cool massage on her that actually made her fall asleep. I guess it was supposed to make her hungry, produce motility and give her some extra stim, but with Maryam, it made her sleep. My punkin. Anyway, Ruth has some herbs she's going to be bringing by the room on Monday for Maryam to get started on. They're supposed to help with motility, cause hunger and have affects on SID. (sensory integration disorder) So, I'm very much looking forward to seeing how these will affect Maryam! I'm expecting them to be nothing but positive.
Today at Maryam's 3pm snack she drank 2 ounces of strawberry Pediasure and as a reward she got to trapeze into a ball pool! She went nuts! She must have trapezed in 4 or 5 times and loved every minute of it. And it helped having Daddy in the ball pool to throw her around a bunch of times too.
Last night there was something in the lobby called Radio Lollipop. I took Maryam downstairs to check it out. As soon as we got off of the elevator she heard the music and went nuts! She ran towards the radio booth and started dancing and running around. It was too cute to see. She spend the next 45 minutes constantly running, jumping and dancing. She went inside the radio booth a million times, she waved at everyone through the glass, she ran around the lobby saying hi to everybody who looked at her. She found another little girl her same age and engaged her in some play time too. Brett showed up at the hospital while we were downstairs so he got to enjoy watching Maryam make new friends and dance up a storm. At one poing we took her out front and let her run around in the grass. It was the first time she had been outside since Monday and she went NUTS! She ran and played in the grass and danced and jumped in the grass. She raced Daddy back and forth across the lawn, she just had a blast.
When we got back upstairs she asked for some water and a cookie. I wasn't allowed to give her either. We put her in the bath with some new bath toys that Daddy brought her. Then Daddy rocked his baby to sleep while Mommy got a much needed and much more deserved shower.
Over the weekend Maryam will only have one therapy session. The therapy session will be tomorrow morning at 8am for breakfast. After that, the other 4 meals for Saturday and all 5 Sunday will be Mommy's responsibility. Wish Mommy luck! Ha!

2009-05-07T17:54:00.000-07:00

Quick funny story. Maryam was walking around our room balancing a plate on her hand saying "pizza pie here!" And then she'd throw up it up and drop it and say, "diry pizza pie here!" Where the heck does she come up with this stuff?

Pictures of Day 4 at CHOC

2009-05-07T17:17:00.000-07:00

Here is Maryam in her wagon this afternoon for her snack session of feeding therapy.

Celebrating after her snack session with a little jaunt through a tube tunnel. Cute pose huh? These photos are courtesy of her OT Jamie. Apparently she's an armature photographer or something, because these two photos are adorable!
Enjoying a ball pit for the first time! Her favorite toy in the whole wide world is a book, her second is a ball. Now if only these balls had stories on them! Ha!

CHOC Day 3

2009-05-06T17:42:00.000-07:00

Here is the wagon I take Maryam to therapy in 3 times a day, every day. First we head to the floor clerk and sign out, then we're off. In her wagon is Maryam, her food tray and her folder. In her folder is a copy of her schedule and a spreadsheet for logging her foods she's consumed and the volume which she consumed. I have to log EVERYTHING!

Here is Maryam after she woke up from a nap. She was playing with some Dora stickers. At this point, I actually have a Dora sticker on my nose. Sadly for you, you don't get to see a picture of that! Ha!
Maryam's eating today has been the same as it was yesterday. Her volume hasn't increased much, but she is eating more variety.
Tonight at dinner she did better than she has all week! Of course, there's no one here to see it, which just SUCKS! But she ate 2 ozs. of spaghetti, 2 ozs of whipped cream, 1 oz of sweet potatoes and 55mls of Pediasure!! (which is almost 2 ozs!)A few minutes ago Maryam came up to me and said, "I know! Watch Shamu!" I said, "Shamu is at Sea World, we're at the hospital." Maryam replied, "oh, Ok. Daddy Sea World!" So, I called Daddy and had him tell her he'd take her in a few weekends. She's so funny!

Pictures of Day 2 at CHOC

2009-05-06T17:37:00.000-07:00

Here are the bruises from the header Maryam took. They're hard to see, but the top bruise is in her hair line and the cut is where the arm from her glasses was. That's my punkin! Tonight she slipped and bruised her chin pretty good....GOOD TIMES.

Here is a picture of Maryam wearing her "pizzy party hat." Its made from a paper plate and decorated with crayons.

Here is Maryam after some pudding and whipped cream. The table she eats at is really cute. They gave her a Winnie and tigger placemat to eat on.

Photos from Day 1 CHOC

2009-05-06T17:29:00.000-07:00

Maryam on her Mickey Mouse Clubhouse bed. She pushes every single button on the bed. I finally unplugged it so it would no longer be an issue.

Here are some of the decorations in Maryam's room. The super cool Feeding Team had it set up really nice. They called ahead and asked me what she likes and they decorated accordingly! how sweet is that? She LOVES her room.

Here is the sign in the lobby. I just thought it was sweet, so of course I took a picture.

CHOC Day 2

2009-05-06T07:25:00.000-07:00

Wow! What a looooooooong day! Our day started at 7am with my alarm. Both Maryam and I were too tired to wake up on our own. Thank goodness for Beyonce and her "Single Ladies"!

Yesterday was our first full day at CHOC. And oh boy, were we busy!
7:00 wake-up
7:30 breakfast tray delivered
7:45 check out of the floor with the floor clerk then head down to therapy in the basement.
8:00 feeding therapy started
9:00 random mini-unofficial team meeting in the elevator up to our floor
9:45 snack delivered
10:00 snack in our room
10:30 Child Life Play Room (M's child life coordinator Peggy watched her for a bit while Mommy took a shower and ate lunch!
11:30 lunch tray delivered
11:45 check out of the floor with the floor clerk then head down to feeding therapy in the basement
noon feeding therapy started
1:00 Dr. Katz poked in to tell us that he put a hold on the med that the mini-unofficial team meeting decided was the reason for M's hair pulling
1:15 Jill and Jessica the nutritionists come in and ask us questions and give us information
1:20 M takes a nap
2:00 Lee the social worker came in to check up on us
2:40 woke up Maryam for her 3:00 feeding therapy snack
2:45 check out of the floor to go to feeding therapy in the basement
3:00 feeding therapy
4:00-6:00 FREE TIME which is code for "good luck keeping your kid occupied for the rest of the night!"
4:15 bundle up Maryam because she was freezing. She asked for socks and a coat!
4:30 customer service comes by to make sure we're comfortable. I asked them to lean on maintenance about our temperature. They agreed that our room is freezing.
5:00 Maryam decided she wanted to go to a park. When I told her there were none in walking distance, she replied "Oh, Ok, I know! Disneyland!" Although I applaud her efforts and agreed that Disneyland would be a great place to go, we compromised on a walk around the floor. Our walk lasted until 6pm!
6:00 dinner in our room
7:00 Mommy sits down to eat her dinner when Maryam decided to take a header off of the bed and bruise her temple and cut her face. GOOD TIMES.
7:03-7:25 steady stream of nurses and doctors checking Maryam's head and eyes
7:30 maintenace finally arrived to fix our temperature! HOORAY!
7:35 volunteers came around to make crafts. Maryam made a party had then decided she wanted to go to a "pizzy party." I have no idea where she got that idea from.
7:45 bathtime! Woohoo!
8:30 tried to get Maryam to sleep.
9:15 Maryam fell asleep
9:30 Mommy started the feeding pump
9:35 Mommy fell asleep without dinner

CHOC Day 1

2009-05-04T20:50:00.000-07:00

Well, we're all checked in and completed our first day at CHOC. We arrived at noon and were checked in by 12:30. We were in our room by 12:35. They're very efficient here.
Our nurse's name during the day was Linda and her assistant's name was Scott. Both of them were very nice. Maryam cried as soon as they came into the room. She has a serious fear of anybody wearing nursing scrubs or white coats. It sucks. After they got her weight they switched out the crib for a twin bed. We didn't want Maryam to go back to sleeping in a crib when she has come so far in her own big girl bed.
At around 2pm her Child Life coordinator came and got us to go check out the floor play room. This place is amazing! They have 3 different kinds of gaming systems for the big kids!! Too bad Maryam's not big enough to play Wii Mario Kart. Bummer for Mommy. However, she did love playing with the other children in the room and checking out the hundreds of toys.
At 3pm we came back to her room for a therapy session. Today was the only time therapy will be in her room. The rest of our stay therapy will be held in the basement in the Rehab department. Today's therapist was Jennifer the Speech Therapist. She is very nice. Maryam chowed down on some whipped cream (not Cool Whip because whipped cream has WAY more calories in it) and some Ensure chocolate pudding. I guess they like the Ensure because its fortified and has a ton more calories than normal pudding. All in all she ate 1/4 cup of whipped cream, a little over 1 ounce of pudding and drank about an ounce of Pediasure. The Pediasure has an additive called Duocal. Duocal brings the caloric value of the Pediasure from 1cal per ml to 1.5cals per ml. So its like she's drinking 50% without actually having to drink 50% more.
After the 50 minute session with Jennifer I went over everything she told me about Maryam's schedule and how to count her calories and how to log everything so that I wouldn't forget by tomorrow. Daddy brought all of Maryam's toys and clothes up so we could make her room a little more like at home. We put Mickey Mouse Club House sheets on her bed and set up her toys so she could easily access them whenever she wants them.
At 5pm one of the dietitian techs came in and went over the calorie counting and menu planning with me again. Her name is Jessica, I think. She told me that Maryam's calorie chart will be picked up everyday about mid morning and given to the nutritionist. It all seems so very hard corp!
At 5:30 Dr. Katz and Nurse Robyn came in to check up on us. They run the feeding team. They came in to make sure that everything is running smoothly so far. We had a few mix ups with meds, but they were fixed before Maryam actually needed her nightly meds. Dr. Katz explained that he wrote orders for Maryam not to be disturbed between 8pm and 7am so that she can get as much sleep as possible. How RAD is that? Too bad the freaking janitorial staff just came into to get the trash at 9:20. I guess that no disturbing rule only applies to medical staff? Ha!
At 6pm Maryam's dinner tray came in. She's on a puree diet. So, everything I order for her comes in already blended up. She got spaghetti and meatballs and some sort of chicken thing, and mashed potatoes and gravy. On every tray she's going to get whipped cream, Pediasure and Ensure chocolate pudding. She ate about 75% of the spaghetti! Woohoo! She wouldn't touch the chicken stuff or the mashed potatoes. Old tried and true whipped cream and pudding went down well too. She drank about 1.5 ounces of Pediasure too. Dinner went fairly well, I'd say.
At 7pm I put Maryam in the bathtub. She always enjoys her bath. Our room is FREEZING cold so when it was time for her to get out of the tub she was very cold. She kept saying, "too cold mommy, too cold....back in peeez." Apparantly the temp should be fixed at some point. We've asked 4 times since we checked in.
At 8pm Maryam's evening staff came in to meet her. Our nurse's name is JoAnn and her assistant's name is Wendy. They're both very nice. JoAnn showed me how to use the feeding pump and brought in Maryam's meds. The pump is very similar to the one we used to have so it was a no brainer.
By 8:30 Maryam was asleep! At 9pm I started her pump and then sat down to update the blog.
That's my day. Hopefully tomorrow I'll have a better signal and can upload photos. Nighty night. I'm exhausted.

Happy National Scrapbooking Day!!!!

2009-05-02T18:52:00.000-07:00

I thought I'd share the first 3 pages of Maryam's CHOC scrapbook with you all. The first picture is the first page of the book. The second picture is the two page spread of our stay at the RMH. The 3rd and 4th pictures are the individual pages. ENJOY!

Maryam has been motoring right along with drinking the Pediasure. She's still averaging about 2 ounces every 4 ounces. I know that doesn't sound like much, but its HUGE for her!!!! I think, from now on, I'm going to say she's 75% tube fed instead of 100% tube fed. Because really, she's taking over 25% of her daily calories orally now. How amazing is that? I think its pretty darn cool.

Unfortunately this morning Maryam woke up with another bald spot. So, now she has a bald spot on top of her head and another one on the back of her head. I think tonight after she goes to sleep I'm going to put socks on her hands so she can't use her fingers as well to grasp her hair. Last night she actually started crying in her sleep and I think now its from her pulling her own hair. When I went in to check on her she didn't have her hands on her head and there wasn't enough light for me to notice that she had pulled her hair out. Bummer.

Pre admit meeting and eating update

2009-05-01T21:43:00.000-07:00

We had Maryam's pre-admit meeting today. We have a team of 15 people working with M....crazy, right? They told us about their plans of action. Day one, no boluses, she'll get a bolus via pump at 10pm of 300mls of pediasure over a duration of 2 hours. And that's what she'll get every night. That basically means they're cutting her bolus down by 70% and she'll have to make up the rest during the day.
I'm going to be ordering her food off of a menu. The food will come to our room about 30 minutes prior to therapy. I'll take M and her food tray down to rehab in a wagon. Once we're down there, they'll puree her food. At that point she has exactly 50 minutes of therapy. This will happen 3 times a day starting at 8:00am, 12:00pm and 3:00pm. Her 10:30 snack and 5:00pm dinner will be in her room with me.
She has scheduled play time (in a play room on the floor) and scheduled massage times (with a traditional Chinese medicine doctor). And every Friday the team meets to go over what happened during the week and make any necessary adjustments for the following week.
Brett won't start feeding her until week 3. CRAZY. That means, its ALL me! AGH, scary. At first we were told that we would have a rocking chair in our room so I can rock Maryam to sleep. I know its not "age appropriate" but I LOVE ROCKING MY BABY TO SLEEP. Well, we found out today that we aren't going to have one. So, now her bed time routine is changing dramatically. She not only isn't going to be rocked to sleep, but she's also not going to have her bolus. She has been rocked to sleep with that combo for over a year now. It should be interesting (my nice word for stressful) getting her to go to sleep on Monday.
Yesterday her total oral caloric intake was 409! She drank an entire can of Pediasure by the end of the day!!! She was averaging about 2 ounces every 4 hours. That brought her weekly total to 1189! (Thursday to Thursday) Pretty freaking amazing if you ask me.
The sad news is that on our drive home after the meeting Maryam pulled so much hair out of her head that she made a bald spot right on top. Its heart breaking. She is so stressed. I hope that these massages can help her relieve some of that stress so her poor scalp can get a break.

Quick update!

2009-04-30T13:41:00.001-07:00

I would just like to quickly note that April 30, 2007 was the day we FINALLY brought Maryam home from the hospital. After 2 surgeries and nearly 5 months in the NICU it was great to not wear a yellow hospital gown when holding her.
Last year on this day I wrote a poem about how important this day is to us. I figured I couldn't beat it this year except to be able to report that Maryam consumed 409 calories orally today! That's the most she's ever taken in on any day in her whole life! What a way to pay tribute, right?
If you're interested in reading the poem I wrote last year just click here.

M has drank 140 mls of Pediasure today! And eaten 92 cals in baby food!! That's 232 cals orally today! Hooray!!!!
JL
Sent from my Verizon Wireless BlackBerry

Look closely

2009-04-29T23:18:00.000-07:00

Yep, you read that right! Maryam is going to be a big sister! I'm 14 weeks pregnant and due October 30. Of course Maryam has no idea what that means. Here's how the conversation went:

Mommy: "Maryam, you know how Ian is Anna's big brother and Anna is Ian's little sister? Or how Trip and Paddy and Collin are all brothers?"
Maryam: nods
Mommy: "Well, you're going to have a little sister or brother soon. You're going to be a big sister."
Maryam: "OK."
Mommy: "Mommy is growing a baby in her tummy. (rubs belly) Mommy's belly is going to get really big as the baby grows."
Maryam: (with eyes wide) "Wow, OK." (runs after a ball)

Dirty Girls

2009-04-29T23:12:00.000-07:00

Team Work: Maryam puts the dirt in the wheel barrel, Charlie Mae takes it out.

My turn: Charlie Mae takes the shovel, shovels the dirt out of the wheel barrel and into her hand.

Let's go, go, go! They ran on this ply board for about 15 minutes yelling GO, GO, GO.

My turn: Maryam finally took the wheel barrel from Charlie Mae in hopes that she'd finally be able to fill it.

GREAT NEWS!!!! Maryam's eating has improved by leaps and bounds in the past week! Its actually pretty fascinating. Today she ate 3 ounces of baby food at breakfast (3/4 jar) and lunch she ate a whole jar (4 ounces) and at dinner she ate a whole jar, plus the last ounce from breakfast!!! That's 12 ounces of baby food today and 215 calories. That's almost as much as one can of Pediasure! I think I'm going to go out on a limb and dare say that Maryam is no longer 100% tube fed, and is now only 75% tube fed!!!! HOORAY!! You may all stand up from your computer desks and yell and jump and cheer!

Progress

2009-04-27T16:41:00.000-07:00

Maryam's been eating anywhere from an ounce to 3.5 ounces 3 times a day! Its pretty exciting news. On Sunday she actually took in 240 calories orally! She at 5.5 ounces of baby food and drank 4 ounces of Pediasure, it was by far her most successful day as far as eating goes. Yesterday she took in 165 cals and today she's only taken in about 40 cals. She has a cut on her tongue and we have no idea where it came from, I'm kind of wondering if maybe that's why she's not eating as well today as she did yesterday and the day before.
Hooray for progress!!!!
In crappy news, Maryam has started pulling her own hair out when she sleeps. The past few mornings, or as long as a week, I can't remember, Maryam wakes up with gobs and gobs of hair in her fingers, on her clothes and on her sheets. I know her hair isn't just falling out because there isn't excessive hair in the bathtub after a bath or in her comb after I comb her hair. My BFF Christi did some research and found that toddlers do this as a self-soothing tool when they're stressed. GREAT, my two year old is stressed. I'm guessing her new schedule and all the food she's eating is the major cause of her stress. Thoughts?

UPDATE: Maryam ate an entire 4 ounce jar of baby food at dinner tonight. It took about an hour and 20 minutes, but she ate it all! That particular food was sweet potatoes with turkey and it contained 30 calories. HOORAY!!!!

Update

2009-04-25T13:56:00.000-07:00

I just wanted to let everyone know that this morning Maryam ate 2 ounces of prune/apple puree and drank 2 ounces of strawberry flavored Pediasure. At lunch time today she ate 1 1/2 ounces of macaroni and cheese puree and drank another ounce of strawberry Pediasure! How RAD is that?

Helping!!

2009-04-23T22:52:00.000-07:00

Maryam saw Daddy shoveling rocks and putting them in the wheel barrel and decided she needed to help!

So, she and I got her shovel and wheel barrel and brought them out to where Daddy was working.

Mommy took pictures instead of helping! But Maryam sure was a good little helper!

So, Maryam's OT Melina at CHOC decided that Maryam is doing much better at swallowing purees than she is at chewing and swallowing solids. She probably got this idea from the crazy tremendous amounts of Cool Whip the girl can eat. While she was at the feeding session on Tuesday Maryam ate about 1/2 jar of Gerber 3 sweet potatoes and at her session on Wednesday ate about 1/3 jar of Gerber 3 fruit medley! Last night when we got home I gave her the rest of the sweet potatoes and in about a 45 minute dinner session with Mommy she only spit her food out 3 times! THAT'S HUGE!!!!!!
This morning I tried giving her some Cinnamon apple oatmeal and she was back to the gagging, purple turning, choking, not breathing baby I'm more used to. That is a typical reaction Maryam has to eating purees. I actually knew how to handle that! Seeing her put a spoon in her mouth and swallow food is shocking! Yeah, we do things backward in our family. The more I looked a the consistency of the oatmeal, the more it made sense. It was just way too chunky for her. I think the chunks is what set off the gag reflex which lead to the turning purple, choking and not breathing I was talking about. So at lunch I tried a food that was less chunky, a broccoli, carrot and cheese combo. She seemed to REALLY like this one! UNTIL she hit a carrot....then it was back to the gagging, well you know the rest. So, I pushed all the carrots aside and she managed to eat about 1/3 of the jar. CRAZY! At dinner time I decided to take a break and let Brett try. He fed her some chicken puree that she seemed to gobble right up! He gave her a bowl full and she ate it all! He said she only spit it out once. Talk about progress, right?
The super crazy part, aside from actually seeing Maryam put food into her mouth and swallow it, is that less than 6 months ago, there was NO WAY that we could get any baby food stuff in her mouth. Just the sight of it made her gag. I feel like I'm seeing real progress! Not that we haven't seen progress in the past, because we have. There was a time when Maryam wouldn't drink water, or put any food into her mouth....NOTHING. Now she's drinking about 8 ounces of water a day, eating baby food, chewing on burgers, fries and nuggets and asking for "a bite" of almost anything Mommy and Daddy are eating. She's come a very long way.

Tonight I tried getting Maryam down another 15 minutes earlier than last night's 9:50pm. I thought I was moderately successful. I laid her in bed at exactly 9:42. I was pleased with my efforts because that's 8 minutes earlier than last night! THEN the little bugger got out of bed and 10:07 and I had to start all over again. I finally put her back in bed at 10:35....definitely NOT a success story. So, now I have a plan. Tomorrow morning I'm just going to wake her up when I get up. No more letting her sleep in until 9:30 like she did this morning. Maybe if she wakes up earlier, she'll go to bed earlier. I guess I'll just have to wait to see. I only have 10 more days to get her on the CHOC schedule! That schedule is up and at 'em at 7:00 for vitals and in feeding therapy by 8:00am. Then after that, its go, go, go until bed time. Wish us luck!

Photos from the RMH

2009-04-23T18:08:00.000-07:00

Here is Maryam playing out on our balcony.

Here is Maryam and Daddy with the clown. She didn't want to have anything to do with him. Daddy was able to get her to warm up to him a little bit though.

Here is Maryam on the sign out front. She is looking at Daddy because he just sat her up there and jetted. She actually said, "heeey" when he took off. It was funny.

Here is our view from our patio. If you look really closely in the distance you can see Choco the bear on the top of CHOC hospital. (just to the left of the first palm tree and down a bit.) To all of our non so cal friends, on Tuesday in OC it was 93 degrees! And yes, those palm trees are EVERYWHERE! Ha!

Day two of our appointments went well. Maryam's feeding session with Melina wasn't as good as it was the previous day, she was being super sensory. She couldn't stay seated, she was acting very anxious and pretty much just didn't want to be there. I actually had to step out of the room because she kept wanting to hug me and sit in my lap. I dismissed myself and the session went better after I did. Maryam managed to eat about 1/3 jar of fruit medley! Woohoo!
After the feeding session we had another meeting with the psychologist and social worker. They're bot REALLY nice. They had given us a bunch of information on what to expect the day before and wanted us to read through it and come back with questions. We only had a few questions because the information they gave us was very in depth. After talking to Cindy for about a half hour I have to admit I started to get anxious. She explained that this hospital stay isn't just about Maryam, but that its also about me as her primary feeder. She went over the rigorous schedule again and reiterated how important it will be to try to find time for myself to do simple things like eat and shower! Ha! She's also making arrangements to get me phone numbers of other parents who have gone through the program so I can call them and get a parent's point of view.
We were told that during the 3rd week of the program Maryam is allowed to have visitors but that they kind of discourage it. That often times family will come visit and the baby may want to go home with them, they can get distracted and taken out of the routine we'd worked so hard to create. So Brett and I decided that we were going to pass on having visitors. Luckily our family and friends know how long and hard we've been fighting this eating battle and will totally understand the need to keep Maryam focused. If we change our minds while we're there we'll be sure to let everyone know!
Tonight after Maryam goes to sleep (hopefully by 9:45) I'll hop back on here and go over out crazy schedule! Oh and share the leaps and bounds Maryam has already experienced with her new feeding plan.

Maryam sleeping after a long day

2009-04-21T22:25:00.000-07:00

We're more than happy to report that Maryam has been medically cleared for admission on May 4th!!!! We have a pre-admit meeting on May 1st to formally go over our expectations and devise a team goal.
We've been given a smidgen of homework. We're to try that antihyathamine that Maryam reacted poorly to last time. The time of day has been changed from before bedtime to when she wakes up and the dosage has been changed down from 5mls to starting at 1ml and trying to work back up to 2.5 mls. And we were told to stop the mineral oil for constipation and change to Miralax.
We're also going to continue working on getting Maryam to bed earlier and awake earlier. While she's at CHOC she'll have to wake up daily between 7 and 7:30 for vitals and be at her breakfast feeding session by 8am! That is going to be a challenge the first couple days unless I can manage to make her bedtime earlier before we get there.
I have to say, today was a good day.
JL
Sent from my Verizon Wireless BlackBerry

M at CHOC.jpg

2009-04-21T14:01:00.000-07:00

Well, we've had the first two appointments at CHOC this morning. The first was with the psychologist Cindy and the social worker Lee. They went over our very rigorous schedule. My goodness we are going to be busy!!!!
After that appointment Maryam had a feeding therapy appointment that went fairly well! She responded quickly to the reward therapy with a book. Basically every time Maryam took a bite and swallowed the OT Melina turned the page. Maryam ate half a jar of pureed sweet potatoes! Hooray!
We just checked into our room at RMH. I'm going to give Maryam her bolus then we have to head back to CHOC for her GI appointment.
Hopefully I'll have good news to report tonight or tomorrow.
Hugs to all of you keeping Maryam in your thoughts and prayers!
JL
Sent from my Verizon Wireless BlackBerry

A couple stories

2009-04-17T20:31:00.000-07:00

A few days ago Maryam walks out and I say "hiya punkin baby!" and she replies "hiya punkin mommy!"

Every since we took Maryam to see Monsters v. Aliens she's been asking to watch it everyday. Its killing me! The other day we were watching an episode of Charlie and Lola and there was a scene where Lola's friend comes over and she's peering through a hole. Maryam yes, "Monster eyes!" and I explain to her that just because they're eyes doesn't mean they're monster eyes. She has an Elmo lift and look book that when you lift the flap there are monster eyes. So, I explain that those eyes belong to Lola's friend. And then I explain that monsters don't have to be scary, they can be your friend. Like Cookie Monster and Elmo etc. Skip to 10 or 15 minutes later when Maryam yells "OH NO! Anna Chalie Monsters" and I ask why they're monsters and Maryam replies, "monsters friends." Cute child logic, gets me every time.

Maryam is feeling MUCH better. Last night she slept through the night and today she hasn't stopped running! She'll stop long enough to tell me "Mommy tube" when she's hungry, but that's about it. She still gets out of breath really easy, but she catches her breath pretty quick and then is off again.

We got a call from our coordinator for CHOC a few days ago. We have to spend the night at the Ronald McDonald House on the 21st because they have scheduled 5 appointments in 2 days. We have 3 on the 21st and 2 on the 22nd. Maryam will be having a feeding therapy session with the OT, then a psych evaluation with the psychologist and social worker. After that she has to have a health assessment by the GI doc. The next day she'll have another psych eval and feeding session. Once those are all done, we should be notified whether or not everything is a go for May 4th. Wish us luck!!!!

Rough Day

2009-04-14T23:04:00.000-07:00

This photo sums it up. Maryam had a rough day. Her button was hurting her so badly today that she cried for hours. I'm not exaggerating at all, I literally mean HOURS. No position was comfortable, she was in pain and she was exhausted from being up for a few hours in the middle of the night because of the pain from her button. And to pile it on, she couldn't get comfortable enough to nap today. We saw a surgeon back in January to assess whether or not it was time to move her button so that it wouldn't hit her rib bone anymore. We decided against it at the time because we wanted to try everything that the surgeon suggested first. Well, we've been doing everything he suggested and up until now, it worked, but she's in more pain than ever now. The pain only started a few days ago, but today we could tell that it was excruciating.
Yesterday she came up to me and said button hurt. She lifted her shirt and it was bleeding. We took out the button to see where the blood was coming from and there were two cuts. One of the cuts was actually in the hole, the other was on the outside of her stomach right below the button. It looked like she had pinched the skin on her button and it cut the skin. Today we went back to bandaging with the hopes that putting the bandage between the button and her skin again will help stop the pinching. I also put some Mederma on the cut and the bandage will help keep the Mederma from getting on her clothes. (I guess having Mederma on her clothes would be better than the blood though.)
Earlier today we tried deflating the balloon by an ml to see if maybe that would help with the pain. It did help with the pain, but it also loosened the button enough to cause her stomach to leak. If you look closely at the above picture you can see that her shirt is wet, that's from the button leaking. If you see discoloration, that's from the bleeding.
We'd HATE for Maryam to have surgery on her stomach to build a new track and put in a new hole and button when she's so close to maybe not even needing it anymore. We have to decide between her level of discomfort and pain and the potential of going to the feeding clinic in less than 3 weeks. These are the kinds of decision parents never dream they'll have to make.

Family picures and a baby in a bonnet

2009-04-13T15:05:00.000-07:00

Family pictures! Thanks Uncle Justin!

Dress #2. After Maryam decided to try eating the ears off of her chocolate Easter Bunny, she had to change dresses. This dress is actually Maryam's Baby BFF Anna's Easter dress from last year! Isn't it so cute? Anna never even got to wear it! Its also size 18 months. The bonnet is from Auntie Brande. It took days of convincing and EVERYONE having to put it on first before she finally agreed to wear it. We even put it on Mr. Bishop. He wouldn't pose for a picture, Uncle Justin did though!

The Booty!

2009-04-13T14:59:00.000-07:00

Here is Maryam dumping all of her eggs from her basket.

Checking them out and trying to open them up to see what's inside.

Here Mr. Bishop is trying to get in on the action. He's a hound dog, of course he smells that chocolate!

And I just love this picture. Its so sweet, just like her.

The Hunt

2009-04-13T14:30:00.000-07:00

Maryam's first Easter Egg Hunt was successful. I explained to her that the Easter Bunny came and hid eggs out in the yard and her mission is to go collect them and put them into her Elmo basket. She said, "ok mommy."

She found them all! Hooray!

See, the argument for only one kid is, she doesn't have anyone to fight with over who has more eggs. I remember those days.

Pictures

2009-04-13T14:25:00.000-07:00

Here are the 6 Easter baskets Maryam received for Easter. CRAZY! 6 for one baby. Yep, she's spoiled.

Here is Maryam out mowing the dirt while Mommy watered the flowers.

All smiles, because now she's starting to feel better again.

Here she is trying to play in the mud. It took some convincing, but I managed to keep her from messing up her white sandals.

Dying the Easter Eggs

2009-04-13T14:22:00.000-07:00

We put all the dyes in clear cups so Maryam could tell us which color she wanted to use next. It worked out really well. She'd say red and we'd put the red cup in front of her and she'd drop the egg in.

Mommy was using tongs to pull the eggs out when Maryam decided to just reach in and pull the egg out herself. It was a HUGE step for her! Sensory wise, putting her hand into a wet colored substance usually causes her to gag, turn purple and retch. This time, it didn't!

She just placed the egg into the crate and continued dying her eggs.

All in all Maryam had a great time watching the eggs go in white and come out the color of her choice. After she dyed the eggs, she put stickers on them. Of course her favorite stickers to choose were balls, bikes and cars. There were flowers, butterflies, bunnies and eggs, but nope.
After the egg dying Maryam started feeling sick again. She got dark circles under her eyes, started coughing and just didn't want to do anything. We spent a good few hours holding her and trying to make her feel better. After a few hours, she was ready to go again.

Easter dress

2009-04-13T14:16:00.000-07:00

Daddy sleeping next to Maryam. Maryam had to have an albuterol nebulizer treatment every 4 hours, so Daddy slept by her to make sure that happened. Also, he was there for her if she woke up coughing or had any apnea. When Maryam woke up in the morning she was happy and seemed to be feeling well.

Here is Maryam's official Easter dress. She had so many to chose from, but we bought this one specifically for her to wear that day. The others we have are nice, but they're all HUGE on her. They're size 2T and this one is 18 months. I do have the incredibly shrinking baby after all.

I love the above photo, it looks like a little ballet pose! Cousin Marcy will be so proud.

I LOVE this picture because Maryam looks so very happy!!!

Maryam's Sick

2009-04-11T23:08:00.000-07:00

Maryam giving herself her breathing treatment.

She's so good. I'm so proud of her. She's just trying to take it all in stride. Now if only Mommy did that! Ha!

So, its been a rough few days. Thursday Maryam started retching a ton. It was awful. She retched with her formula, without her formula, just retch, retch, retch. Thursday night she got so bad that she actually threw up. She threw up 4 times and went through 4 different sets of jammies. It was terrible.
When she woke up Friday morning Brett and I decided to give her Pedialite instead of Pediasure to see if that would help her with the retching, it didn't. In fact, the retching seemed to actually get worse. Again she was retching with the feeding, between feedings, hours after feedings, in the middle of a nap, the middle of the night, you name! But now it was a little different. Now the retching started with a cough. If you've heard this kind of cough before its easily identifiable. Its the kind of cough your child makes when she's trying to get extra air. She was coughing for breath.
Last night at 3am we couldn't take it anymore. Maryam was coughing and retching so bad that she hadn't gotten any sleep and was crying out from fatigue and pain that I finally called the KP RN advice line. She suggested, based on Maryam's symptoms, that we take her to the ER. Good times, right? So, at 4am we're in the car and heading to Joshua Tree.
When we get there, she's sating at 97%, has a low grade fever of 99.7 degrees and isn't coughing anymore. We looked like TOTAL liars! She was acting totally fine. She had even started talking again! (something she hadn't done all day) After we went over the symptoms with the doctor and went over her VERY long history he thought it would be in her best interest to do a chest x-ray. The chest x-ray came back a little confusing for the doctor. Having nothing to compare this particular x-ray to, he couldn't tell if she had pneumonia or if what he thought was pneumonia was just scar tissue from her Chronic Lung Disease. So, he gave her an antibiotic for pneumonia and sent us on our way.
We got home around 5:30 and M didn't go back to sleep. Well, she slept for about an hour on an off on my chest. She was just terribly uncomfortable from not being able to breathe. It was terrible. I emailed her pediatrician and told her about our night and asked if she had any suggestions. She wanted to see M to make sure she didn't need an IV for dehydration and also wanted to give her a steroid and check her ears for the ear infection she's had the past two weeks. So, at 10:15 we were on our way to Palm Desert. Almost immediately she noted that Maryam was breathing faster than normal and was clearly struggling for breath. I explained to her about the coughing and retching and vomiting. She called it "air hungry". She said this causes coughing which can lead to retching, which can lead to vomiting. Our little one was having a severe Asthma flair up with respiratory exasperation. Dr. Mohan gave her a shot of steroids and a shot of antibiotics. And she gave her a breathing treatment in the office. She counted her breaths and her breathing slowed down after the breathing treatment and then slowed even more after the steroid shot. Unfortunately Maryam's single ear infection in her right ear is now in both ears. UGH. The good news is that the antibiotic that she was given for the pneumonia should also clear up her ears. Hooray!!!Have I told you all how much we love Maryam's pediatrician? WE LOVE HER!!!!!
We were sent home with a liquid steroid and antibiotic that we're supposed to start tomorrow. She said if Maryam is still requiring the rescue inhaler every 3 hours for more than 2 times in a row then she'll have to be admitted because that would mean they don't have her Asthma under control.
Right now Maryam is asleep in her bed, but she's still coughing herself awake. She's not due for another breathing treatment for another hour. I just pray that she can stay asleep long enough to get to midnight. Once she gets the breathing treatment again she should stop coughing for another 5 hours or so. As you can see its been a rough few days for all of us. Now I just hope we can get her healthy and stay healthy so that she can still go to CHOC. Its only 3 weeks from this Monday. Say your prayers.

Its not easy

2009-04-09T00:11:00.000-07:00

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!

Maryam's first trip to the movies!

2009-04-08T23:54:00.000-07:00

We took Maryam to see Monsters v. Aliens in IMAX 3D and she LOVED it! Here are Daddy and Maryam posing for a picture in front of the marque.
Here is Maryam trying to walk in holding her super HUGE glasses on her face. How lame is it that they didn't have children size glasses for a 3D cartoon? LAME.
Here is Maryam walking inside with her glasses on, but she didn't like how dark it was, so she pushed them up for a bit.

Here is Maryam sitting on Mommy's lap. She wasn't heavy enough to keep the seat down, so she sat on my lap. I think she preferred that anyway because when she got a little frightened she just turned around and gave Mommy a big hug.

Here are Maryam and Anna chatting. The sound broke about an hour into the movie so we sat around listening to the remaining crowd play Mystery Science Theater 3000. After the theater announced that they couldn't repair it and that they'd give us our money back, Maryam and Daddy ran through the theater. Maryam LOVED it! She just kept running up and down the stairs saying "go, go, go, go Maryam, go, go, go. go, go, go Daddy, go, go, go." It was hysterical.

CHOC/Inurance Update

2009-04-08T23:52:00.000-07:00

Here are some pictures of Maryam playing with Mr. and Mrs. Potatohead. She loves them!

So, I've been avoiding telling this story until I had all the details. I just recently received all of them, so here it goes. On March 6th I took Maryam to the doc's office because she had a tummy virus. While we were there I decided to have some of our prescriptions filled. When the girl range me up she gave me some ridiculously large amount. I was SHOCKED! When I asked her why it was so much she told me that it was the price for non-members. Uh, HELLO! I had just paid Kaiser Permanente $1800 on March 1st to cover both Maryam and I. The very nice lady called Member Services and they proceeded to tell me that my COBRA coverage had been canceled since the company I had the COBRA through didn't renew their Kaiser contract. They told me I needed to apply for coverage or get Maryam covered under a conversion plan. I drove an hour and a half to Fontana to get the Conversion Plan packet for Maryam. The whole time I was driving there I just kept thinking that I have to get her back on a Kaiser plan so that she can go to CHOC. I was crying, I was a mess, I honestly felt like my dream of having a baby who could eat had just been shattered. It was awful.
Once I got to the Member Services Office I felt much better because the nice lady there explained that under a conversion plan Maryam wouldn't need to be medically qualified! Hooray! Because NO ONE would insure Maryam if they had a choice, she costs a fortune to maintain! Well, the new conversion plan costs even more than our old plan and the benefits are very inferior. Maryam's CHOC stay went from being covered 100% to us having to pay $200/day! So, for 19 days we're going to be paying $3800. BUT, if it cost a million dollars, I'm sure we'd find a way to make it happen. This opportunity means the world to our family. The dream of having Maryam eat is within our reach, I'm not going to let ANYTHING get in the way of making this happen.
Our next meeting with the CHOC team is April 21st. The three of us have to meet with the GI Doctor again and also the team psychologist. From what I understand, the psychologist is going to go over the plan and make sure that we can handle it. I imagine it has to be difficult to watch your child be deprived of a bolus feeding knowing that she's starving. Especially now that Maryam actually asks for her bottle and tube.....yep! Hopefully everything goes well at that appointment and we'll be checking into the clinic on May 4th! That's less than 4 weeks away! HOORAY!
On April 4th Maryam decided to celebrate the one month count down by letting Mommy spoon feed her an entire bowl of Cool Whip! It was the most exciting thing ever! She actually let me spoon feed her without turning her head or pushing my hand away! Most of you mommies get to do that when your child is 6 months old, I had to wait until she was 2 years and 4 months! The even better news is that she's let me do it everyday since then! Hooray for progress!

Health update

2009-04-08T23:27:00.000-07:00

Mr. Bishop waiting for Maryam to drop some of her "blue cookie".

Yellow teeth from the cream of the cookie. It took her a minute to figure out that its the same type of cookie, it just has yellow cream instead of white.

Mr. Bishop checking to see if there is any residual cookie hanging off of her.

I KNOW, I've been a VERY bad blogger lately, my apologies. When I last updated the blog I wrote about Maryam's ear infection and her up coming Synagis shot. The GREAT news is that Maryam had her last Synagis shot! Hooray!!!! The bad news is, we had to take her back to the pediatrician's office yesterday because she had a fever again. Monday afternoon she was really hot, when I took her temp it was 103.3. Of course Monday night she didn't sleep and kept getting hotter and hotter. Through out the night I couldn't keep her fever below 102.7, it was awful. So, Tuesday morning we took her back in to see Dr. Mohan. Dr. Mohan thinks that Maryam should continue with more antibiotics. So, right now we're on her second round of antibiotics for the same ear infection. If this round doesn't work she's going to give Maryam antibiotic injections.
She doesn't want to give Maryam tubes yet because of Maryam's respiratory history. She fears that if something were to go wrong in the "simple procedure" that she'll need to be intubated. IF that were to happen her throat would still be soar for her trip to CHOC in May and probably wouldn't even be able to go. So, Brett and I decided to follow what Maryam's team of doctors suggest and wait on tubes until after May. Hopefully by then, with spring in full swing, she won't be getting any more ear infections!

Disneyland Trip

2009-03-30T10:05:00.000-07:00

Auntie Sarah, Charlie Mae, Yaya and Maryam on the tram into Disneyland.

Maryam hugging Yaya in the Play House Disney Show. Maryam and Charlie LOVED it! They danced and signed and waved hi to the different characters, it was fun to watch them watch the show.

Maryam LOVING Goofy. She walked up to him and said, "Hiya Goof!" It was hysterical.

Maryam and Mommy getting ready to board the tram to leave. We had a very nice day. There were millions of people there though! We had totally forgot that it is spring break time! DUH. We only went on two rides and only spent a few hours there, we didn't want to push our luck since there were so many people there.

Today we're heading down to San Marcos for Maryam's second to last Synagis shot. I'm less than excited about it. But so far they have worked! So I can't complain too much. I just know with Maryam not feeling well that the car ride is going to be miserable for her. We took her back to the doctor on Saturday morning because we couldn't get her fever to break, she has yet another ear infection. This morning is the first time in days where she hasn't had a fever. I hope that means that the antibiotics are working. Her doctor says that her allergies make her sinuses drain and hers tend to drain into her ears, which causes her ear infections. So, as long as she has allergies and her sinus drains the way it does, this is going to be a pretty regular occurrence. We're starting to reconsider the tubes.