Pictures of a feeding session

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?

CHOC Outpatient Day 2

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.
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Back in OC

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!
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We're home!!!!!!

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

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

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

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

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.
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CHOC day 6

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

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!

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

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

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

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

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

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

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.

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.

Helping!!

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

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.