In her room

Maryam is in her room. She's resting comfortably. It took her quite a bit longer to wake up than anyone anticipated. The anesthesiologist came into recovery, looked at her eyes, listened to her breathe and determined it was indeed the Demerol keeping her asleep.  Before he left he commented again (for the 3rd time) how great she looks for a 25 weeker! He attributed technology, strong will and parenting. I think hr will and technology did most of the work.
Right now she's laying in bed and watching Tangled. She keeps asking for her IV to come out and to go home. At 1:30 she'll get to have clear fluids. If she tolerates that she'll be discharged by 2:30. Thankfully, she's breathing great, she doesn't have a fever and she's not too stressed.
Jennifer

Surgery consult

Here are pictures of the inside and outside of Maryam's jammie shirt. I'm fairly positive that the amount of leaking has increased tremendously. Kind of a bummer. The good news is, its not bothering her very much. She is aware, but she's not complaining. You can see that its leaking enough for the content to actually drip down her shirt. Luckily the stomach content isn't irritating her skin.

Maryam's surgery consult is scheduled for Tuesday morning at CHOC. After that, I assume that she'll be put on the surgery calendar.
We told Maryam that if she was brave and didn't cry at her doctor appointment that we'd take her to Disneyland afterwards. She's really scared. But when I ask her what she's afraid of, she says she's afraid of getting a shot. I've tried assuring her that she won't be getting any shots at the appointment, but she doesn't believe me. I guess those winters of Synagis shots once a month and antibiotic and steroid shots have scarred her mentally. Bummer. Oh well, hopefully one day it will all be behind her.

There's that word again, "Sometimes" Part 2

Thursday after ballet class we went out to dinner. Brett and I were sitting across the booth from Maryam and Yaya and Jax was at the end of the table in a high chair. Maryam stood up on her knees to reach something and that's when I saw it. Maryam's stoma is leaking. I remember gasping and pointing. I remember Brett asking, what? I remember pointing and saying, Oh my God. She's leaking. That's when the panic set in. I took her into the bathroom to see if she really is leaking, or if she spilled something. I was right, she was leaking.

I emailed her GI team at CHOC. I put a bandage over her hole to see if anymore leaked out during the night. I asked her a ton of questions like, does it hurt? Does it itch? Have you noticed it being wet? I checked it for infection. It wasn't hot, red, no puss and no smell. It was just leaking!

Brett called Dr. Matt at Maryam's old NICU just to get some sort of assurance before going to bed. I called my friend Jen, one of Maryam's NICU nurses and now GREAT friend. Both agreed that it wasn't infected and that it wasn't an emergency but that she should be evaluated.

The next morning after little sleep I got an email from Maryam's GI team at CHOC. Robyn said that it sounds like Maryam's stoma had reopened or hadn't fully healed and was leaking stomach content. She said it will need to be surgically closed. Then she said something like, "It happens sometimes." I asked her to call me so we can talk in detail about what's going to happen and when.
The surgery is only a couple hours long. Its an outpatient deal. Maryam will most likely be intubated because she will be under general anesthesia. The surgeon will go in, take out the tunnel, sew up her stomach and then sew up the outside of her stomach. Instead of Maryam's stoma looking like a second belly button, its going to look like a straight line. And, it will NEVER leak again!
We're going to see if we can get on the surgery calendar for March. We'd rather her not be in the hospital during the winter months. She's very susceptible to infection and illness so we're going to wait until after the flu season is over.
That's our latest! Wish us luck. I'm still trying to figure out how I'm going to tell her she has to have surgery. She already hates doctors, lab coats, hospitals, doctor offices and anything else medically related. I think physically she's going to bounce back quite quickly, its the psychological trauma that is scaring me. My poor baby is going to be so sad.

If you want to read my first post about the "sometimes baby" you can read it here.

"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's follow up with CHOC

Maryam's appointment with the feeding team went well. I didn't like that I couldn't go, but hey that's life.
They were glad that Maryam has transitioned away from purees so quickly. They like that she is taking less time to eat and that she's requesting foods. The dietitian wants us to sneak vegies into Maryam's diet. She recommended a book and we bought it. The nurse practitioner wants Maryam to gain more weight. So, for now we'll continue giving her a bolus at night and keep trying to put more weight on her.
She came home very excited about spending time at CHOC. She gave everyone hugs and sat in one of her therapist's lap during the meeting. I love how much she loves them. The team has been amazing. She loves them, we love them and they have forever changed our lives.
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More pictures

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

-Maryam- "Yes."

More pictures

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

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?