It's been brought to my attention...

That I have seriously been neglecting my blog. My apologies. Total blogger FAIL. Instead of boring you with excuses, I'll fill you in on all the exciting things that have been going on!
First things first, we're finally moved into our new place. My best friend rented us her house while she prepares to build a new one. My inlaws let us stay with them for a few weeks while we got situated.
I got Maryam registered for first grade! It's so hard to believe my little miracle baby is starting first grade and will be 7 years old in 4 months. Time sure speeds up with age. I also registered Jax for pre-k! He doesn't want to go, but I'm hoping he'll change his mind once he's there. Last of the school news is that I've decided to go back to school to be a nurse. Now that the kids are older, in school, and way less dependent, it's time. I have to start from scratch though because I graduated from college 15 years ago, none of my prerequisites count. I'm nervous, but I know I can do it. Enough about me, I'm boring!
I have very exciting Maryam news! Maryam's eating has come a very long way in the past month. Every night she eats the same food as us. I'm no longer having to cook her a separate meal from the rest of us. It's wonderful!!! She's been trying different meats, veggies, soups, and even some fruits. What? Fruit? Yup! She hasn't found one she likes yet, but she's nearly stopped gagging & turning purple just from them being on her tongue!
If any of you moms out there want to know my technique for getting her to try new things, here's what I do. Everyday I make sure to present her with one solid food (solid is what I call a food I know she eats well) and one new food or food I want her to eat better. I always make sure she's hungry by dinner. I don't usually let her snack within two hours of dinner. After she eats her solid food, she always asks for more. I tell her she can have more AFTER she eats the new food.
1/2 piece of grilled chicken
1 scoop of pilav
8-10 green beans
She'll polish off the pilav then ask for more. I'll tell her to eat 4 green beans & 4 pieces of chicken. If she eats that, then I'll give her another smaller scoop of pilav. If she wants more I ask her to finish her green beans & chicken. By this time, she's usually full, but if she isn't, she gets as much pilav as she wants!
This method has gotten her to eat pork chops both grilled & fried, grilled chicken, meatloaf, soup, corn, broccoli, biscuits, strawberries, & peaches. I'm not above a little trickery either. I tricked her into eating yogurt! I bought Oreo yogurt, I know Oreo, but whatever, you do what you do, & I do what I do. I got her to eat yogurt by calling it an Oreo dessert. She didn't really like it, but again she didn't turn purple or gag either.

Caught Cookie Faced

Look at that face! Yep, he's been stealing M's Oreos or M has been giving them to him, either way....there is cookie on his face!

Jax Eats Cotton Candy....YUM

Jax wasn't so sure of this Cotton Candy stuff. He threw it on the ground, he squished it in his fingers, and played with it (I cringed at the thought of wasting perfectly good Cotton Candy!) before he finally tasted it.

He put it in his mouth and he lit up!

He then put it further into his mouth and smiled.

Look at my baby boy's sweet smile. It melts my heart. I'm more than willing to share my Cotton Candy with this little guy.

Maryam's 2nd Belly Button

We have started calling Maryam's button hole her 2nd belly button. If you click on the picture it gets bigger and you can see why! It actually looks more like a belly button than her real belly button does! I'm still very happy to report that there has been no leaking. And we're still using Mederma on her scars and look how fantastic her tummy one looks. I'm telling you, that stuff is miracle in a tube.
In other Maryam news, I put her on the scale the other day and it said 30.2! That's HUGE! Of course she was wearing jeans, but still! Over 30 pounds is crazy!
In eating news, tonight at dinner Maryam ate 3 bites of salad with Thousand Island dressing on it! Took each bite, chewed them up AND swallowed them! She even said she thought it tasted good...WOW. Then she ordered a really big meatball and ate 3/4 of that as well. She topped it off with vanilla ice cream for dessert. It was a fun dinner. Thank you Old Spaghetti Factory, it was a night to remember!

"Normal Kid"

Maryam's appointment was at 4pm. We got there early so I could talk to her about the appointment and try to help ease her anxiety. There were a bunch of other kids there for her to run around with. They had a big waiting room with space for the children to run around, read books, climb on stuff and socialize with each other. Maryam enjoyed running around with the other children. When all the other children got called into their appointments Yaya read Peter Pan to her. After the book I explain, AGAIN, that we were here to have her button looked at and to talk about all of her good eating. As soon as our pager went off she started crying. I picked her up and took her over to the Specialty Clinic where she was being seen and she was completely hysterical. All of my prepping seemed to have been for nothing! I managed to calm her down enough to get her height and weight, after which she got to pick a toy out of the toy chest.

Meet "Inch", the worm Maryam picked from the toy chest. She practiced playing "doctor" on Inch for most of the time we waited for Robyn and Dr. Katz. She repeated everything I had told her at home, in the car and in the lobby. She looked at his "button", asked him what he likes to eat for his meals, asked him how he was feeling, listened to him breath and talked to him "how doctors talk to patients." LOVE HER. As soon as Robyn came in, she was hysterical again! Ugh. After I got her to calm down a bit, we were able to talk about all of Maryam's progress. Maryam even lifted her shirt and showed Robyn her button.

Robyn informed me that according to the 3 day food log I sent in last Thursday, Maryam is taking in an average of 1850 calories per day! WOW!!! She told us that Maryam has gained 3 pounds since they first met her, she's up to 29 pounds and she's grown 4 inches and is up to over 37 inches tall. She said that her height to weight percentage is 25% and is well within accepted norms. YAY! Which means, she's not too skinny for her height! HOORAY!

At that point we talked in code about taking Maryam's button out. I explained that Maryam has absolutely no recollection of ever using the tube for feeding, but when you ask to take it out, she says no. I think asking her to take the tube out is as crazy as asking to take one of her fingers! As far as she knows, its very much a part of her! BUT, we did it!

Valerie, the financial coordinator for the team, brought toys in! Distraction...I'm all for it sometimes! She picked a dolly hairstyling kit and started immediately playing with the fake blow dryer. I asked her to lay down and she freaked out AGAIN! Finally we just sort of held her in place for a few seconds and Robyn had it out! She put the pressure bandage on her and I picked her up and all was normal again. She pulled up her shirt once to look at the bandage and then went back to playing with her blow dryer.

At that point I told Robyn I needed a picture of her with Maryam. She called Valerie and Dr. Katz in. It was all so wonderful! Robyn called taking the tube out a type of "graduation"! I couldn't agree more. Maryam was afraid of Dr. Katz, I'm not sure why, he doesn't look intimidating. He didn't even have a lab coat on! He was as sweet as he could be with her. After a few minutes, she gave him a kiss.

Here is part of the team that made our lives what they are today. From left to right, Robyn Robinson, Nurse Practitioner for the feeding team, Dr. Katz, GI Extraordinaire, our miracle baby Maryam and Valerie Fregozo, financial coordinator for the team.

These are probably some of the nicest, most dedicated people I've met in my entire life. Their program changed our lives. They gave us as parents the tools to help Maryam learn to eat, they gave Maryam the knowledge and confidence to eat and they change the lives of every other patient that walks through their doors. When their patients come through their doors, they have a 92% success rate of their feeding tubes coming out. AND, they are going to be doubling the amount of patients going through their program!!!! How wonderful is that? Think of the lives they're going to change!

After Maryam's appointment I took her to Disneyland. The parks closed at 8 last night, so we only had 2 hours to jam in as much as possible. We started at Peter Pan, went to Small World next, then on to The Haunted Mansion (which is already decorated w/Nightmare Before Christmas decorations) then Pooh twice! As we were leaving the park Maryam said, "I'm hungry. I need a hamburger and fries please." I love hearing stuff like that!!!

Oh, funny story! While we were in with Robyn, Maryam looked out of the window and yelled, "Hey Mommy! Look, there's Taco Bell out there!" Ha! We don't have a Taco Bell in this town, so it was super funny that she was so excited about it! I asked her what she'd eat there and she said, "A taco, of course." Of course Maryam. Of course.

Here is Maryam today showing off her belly. We'll be unveiling her new belly shortly. While I've been writing this post, (which I started 4 hours ago) we sat Maryam down and asked her about her bandages. We asked her if she knew why they were there. We asked her if she thought her button was still there. We told her it was gone. We asked her if she knew why we took it out. Her response? With a whole lot of glee, "Because I don't need it anymore!!!!!" Then proceeded to high five both of us. She said she wanted her friend Anna to come watch us take the bandage off. So, Anna is here. If only Mommy could work up the courage to take the bandages off!!!! Ha! Once the bandages are off, I'll snap a photo and post it.

PS. The red boots are the boots from Maryam's Halloween costume. This year she is going as Jessie the Yodeling Cowgirl. She hasn't taken the boots off since they came in the mail. She wears them EVERYWHERE, including her CHOC apt and Disneyland. While getting on Peter Pan last night, the ride operator said, "I love your shoes!" Maryam said, as seriously as possible, "Actually, they're boots. Thanks."

Tube Free!!!!

Maryam is without a feeding tube for the first time since she was a couple weeks old!!! It came out yesterday around 5pm at her GI appointment at CHOC. I'll post details and photos later. I'm kind of waiting to see how she reacts to seeing its gone.
Right now there is simply a pressure bandage over her hole. If after a few weeks the hole hasn't closed, surgery will be scheduled to close it.

OMG....I'm just bursting with pride!! I AM SO PROUD OF MARYAM!!!

MARYAM EATING PIZZA

Yep, you're looking at Maryam eating pizza! Pepperoni pizza! Holding the pizza in her hand, eating the cheese, sauce, bread and pepperoni all together!!!!

I didn't have to cut it up into tiny pieces. I didn't have to bribe her to eat it! She just picked it up, and started eating it!

I know her face doesn't show how much she enjoyed it, but trust me. Maryam ate EVERY bite! Even the crust.

She has come a VERY LONG way! We owe it all to her feeding team at CHOC and various OT's. They changed our lives in a way that words just can't describe. I use to stay up nights crying, screaming and yelling. I spent hours in front of the computer on the Internet looking for solutions. I'd cry to her OT's. I bought different spoons, forks and bottles. I was desperate. I was depressed. I was angry. I wasn't angry at Maryam! I knew it wasn't her fault! I still know that. I know that the beginning of her life was traumatic. She never got the chance to learn to eat. She never cried for a bottle. She never said the words, "I'm hungry."
Now, after the good people at the CHOC feeding clinic intervened, Maryam is a different person, as am I. I took her inability to eat very personally. I blamed myself for things I had no control over. Logically I knew it wasn't my fault, but I had to blame something and I was my easiest target. Today Maryam doesn't even remember her feeding tube! She has no recollection of us ever attaching it to the button in her belly. As far as she knows, she's always been an eater. Now she will tell me she's hungry as a stall tactic for going to bed! She'd rather EAT than go to sleep! Every time she eats something, a tiny little miracle happens. I cannot be more proud of Maryam. I'm extremely lucky to know such a strong little girl. I'm even luckier to be her mommy.

Maryam has an appointment on Monday with her GI doc and the nurse practitioner from the CHOC feeding team. I'll blog about how it goes.

Maryam and tacos

Daddy made us spicy chicken tacos on Monday night. They were super yummy! Here are some photos of Maryam enjoying her tacos. After she ate her tacos, she ate a whole plate of just the chicken. She had a big bulgy tummy under her jammies on Monday night. It was great!

Daddy brought ice cream for breakfast

Brett brought Maryam a gigantic cup of vanilla soft serve for breakfast on Sunday. If only soft serve had more calories in it! But, Maryam ate REALLY well on Saturday and asked for ice cream and we didn't have any. So, Brett told her he'd bring her some in the morning. Brett's shift ends at 9am, he got her some on the way home.

Here is Maryam with her SUPER HUGE cup of vanilla ice cream. It was big enough for all of us to enjoy. Even Jax loved it!

After the ice cream and water play it was "throw the rock in the bucket" time. Maryam decided to make a game out of throwing the rocks in the yard into her bucket that she would strategically place around the yard. She wanted it far away for a bigger challenge. Jax tried to get in on the action too, but since he can barely stand unassisted and hasn't learned how to voluntarily release yet, throwing is still a bit of a challenge.

In super fantastic Jax news, he hasn't had diarrhea all day! Yay! Its been a week and a half, his hiny needed a break! He's back on solid foods and full formula feeds. Its pretty great having him back again. He even slept through the night two nights in a row! Yay!!

Maryam EATING

I know that for most seeing a child stuff their face with pasta might be sort of a turn off. Most moms probably wouldn't take pictures of it anyway! Well, most of you know that I'm not most moms, and Maryam is not a normal child! Check her out! She ate pasta in cream sauce, or as she called it "white pasta" and lemon w/rosemary chicken.

A year ago I was excited that she was eating pureed hot dogs and cream soups. A year and a half ago I was excited that she drank water. I wouldn't have believed you then if you told me she'd be eating all this now. Never in a million years. Nope! I'd have lost big bucks on that bet.

Last night Maryam ate 2 and a half pancakes with LOADS of syrup and a piece of 3 meats DiGiorno pizza for dinner. The night before that she ate a HUGE piece of chicken enchilada casserole! I'm so freaking proud of her!!!! SO PROUD.

I know I've said this before, and I'll probably say it for the rest of my life. THANK YOU CHOC FEEDING TEAM! Your dedication has changed not only Maryam's life but our whole family's lives. I cannot express how wonderful it is to be able to go out to dinner and not have to have a can of Pediasure on the table and a feeding tube sticking out of her tummy with curious eyes staring at her. And as a mother, I cannot express how wonderful it feels to be able to cook a dinner for my daughter and see her eat it. I was sad when I had to find new and interesting ways to bond with her as a baby, since nursing or even bottle feeding wasn't an option. Now she asks to bake cookies! We get to do normal mommy/daughter stuff together! THANK YOU, THANK YOU, THANK YOU.

Jax had some pasta

Christi suggested that I cut up some of our bow tie pasta and put it on Jax's tray. This was after he already scarfed down a jar of chicken and sweet potatoes! He ate about 10 bow tie noodles with gusto! So after he finished with his pasta he got a nice bubble bath with Maryam's Princess Bubbles. He thought they were hilarious! He's a big fan of bubbles.

I'm getting a lot of texts asking how Jax is doing post op. He had some burning when he had to pee. So, he'd be playing all happy then suddenly start screaming! That lasted until yesterday afternoon. Also yesterday afternoon he started having cold symptoms. Same thing happened after surgery. Today his nose is super runny, he's coughing (more than his every meal GERD cough) and he's grumpy. Last time I heard from the surgeon's RN that colds post op are very common. She said that many kids come in with an underlying cold and the anesthesia brings the cold out. I'm thinking...maybe! But not commonly! I'm betting there is a member of the staff that needs cash and absolutely has to go to work, even with a cold. Or, more likely, the hospital is short on staff and BEGGED an employee to stay who was sick. Who knows. But both times he went there he came home with a cold. ANNOYING. I'm guessing next week Maryam will have a cold from Jax that will undoubtedly turn into an ear infection.

Eating update

Maryam has been eating like a champ! Its a bit surreal to see her feeding herself or hear her asking for food. For example, this morning she helped Daddy bake blueberry muffins. After they came out of the oven she actually wanted to eat one! She ate about 3/4 of it before she didn't want anymore. For lunch, her and Daddy were out shopping and she asked for chicken nuggets and fries! He got her some and she ate 2 nuggets and half a small order of fries. For her snack this afternoon she ate a pudding cup, pepperoni, and a candy bar. Then for dinner she asked for mac n cheese. We had bought some ready mac for when Charlie Mae is here, so we made some for her. She ate all but 4 bites of a single packet! That's a whole day of solid foods, all of which she asked for. When she was eating dinner she kept saying, "all by myself" and would feed herself the mac n cheese. I'm so proud of her.

Jax is eating like a champ too! He finally latched on a couple of days ago. So now our routine consists of me nursing him all day and then Brett bottle feeding him at night while I pump. That way we both get the opportunity to feed him. We've done it this way for a few reasons. One is so we both get to see what its like to feed our new born, two because we want Jax to be able to nurse and drink from a bottle and three it gives Mommy a break. When he does drink from the bottle, he's up to about 70mls in 20 to 30 minutes.
Tomorrow we have to take Jax to Children's Hospital in San Diego for an appointment with a urologist. Jax has hydronephrosis severely on his left kidney and mildly on his right kidney. We're meeting to find out if he needs to have surgery or if we can continue on the regimen of antibiotics he's been on since he was a few days old. From what I understand, a series of tests will be done and then decisions will be made based on the results. Wish us luck!

Eating, eating, eating.....

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.

More eating progress

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!

Eating update

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!

Playing catch up....

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!

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!

Pre admit meeting and eating update

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.

Progress

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!!!!