Thursday, October 28, 2010

One Month

It's hard to believe that one month ago this little girl was in the PICU recovering from her surgery... The Lord is amazing!

Today she had her Fall Party at Mother's Day Out and she was a Dallas Cowboys Cheerleader... She actually let me put these rollers in her hair. She was so excited because she has pretty straight hair and I just don't ever curl it.


That's a lot of rollers...

Here's a picture of Rain 3 years ago when she wore this outfit for Halloween. They really do look so much alike!

And Rain had a BIG day today, too. At her school, every nine weeks the students get rewarded for their academics, attendance and behavior. Each student who meets the criteria is given a special T-shirt, and stars to iron-on to it. After they earn their first shirt and stars, the next nine weeks they get more stars to add to their shirts.

The kids get so excited and work really hard to earn their shirts. Today, Rain earned her shirt and stars for A honor roll and behavior. (She missed a day while Maya was in the hospital)



The classes also get awards for having the cleanest room (voted on by custodial staff), being the best in the hallway (voted by special areas), best attendance and best cafeteria behavior. The special areas also hand out "golden" awards for the classes that give the best effort. Today Rain's class won "Hallway Heros" and the "Golden Shoe".



Here she is with her best friend, Valeria after the awards assembly. I can't believe that she is already in second grade. Where does the time go?



"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."
Jeremiah 29:11

Monday, October 25, 2010

Dr. Kup

Last Thursday we went to see "Dr. Kup", Maya's heart surgeon. It was nice to finally sit down and talk with him about the whole process from start to finish. He is an amazing surgeon and we feel truly blessed that he is Maya's doctor. There's just something to be said for a person who has held your child's heart in his hands... twice.

He seemed really happy with Maya's progress (from the stroke) 3 weeks out. He said that he went back and looked at the logs for the period of time that she was on bypass and saw no dip in the oxygenation levels. They use a very precise brain monitoring system, and he said that it is common to have dips in any case, but there was not even a small one in hers. So still no answer on what or when the stroke occurred. Maybe we will get some answers when we finally get to see her MRI on November 10th. It is all in the past and nothing can be done about it, but if she needs a future surgery-- I don't even want to think about that.

He said she looked great and told her he would miss her... as much as I like him, I hope I never have to see him again! We will continue monthly check-ups with our cardiologist and he will be the one to monitor her progress from her on out.

We had PT on Friday and Maya had not had a good night. But when Alicia came she was all smiles- Go figure! Here she is doing some exercises in her Bebe Gear that my friend Katherine made her. Isn't it adorable?

I'm so happy that we have hooked up because she LOVES to sew on knits and I totally don't, so it's nice to trade. One of her daughters, Jacqueline, was a model for the last shoot. She's so cute!

If you like Bebe gear, check her out on facebook. She posts new pictures everyday of her latest and greatest creations!

We have an OT evaluation tomorrow and PT after that, so Maya will have a full day :)

"Be joyful always; pray continually; give thanks in all circumstances,
for this is God's will for you in Christ Jesus."
1 Thessalonians 5:16-18

Thursday, October 21, 2010

Big Steps

This week we have made some BIG steps forward...

Maya had her first full day of school on Tuesday and she made it the whole day. YAY! It started out pretty rough, though. She cried and cried the from the time I started to fix her hair until she and Daddy left. Then more crying on the way, and of coarse when he dropped her off. Her poor teachers! Not only do they have to deal with all the other stuff, but now she having meltdowns, too? Luckily, they are two of the sweetest and most patient women I have ever been around, and after a little distracting, she was good to go! Thanks Ms. Candy and Ms. Shari for loving her like you do!


Yesterday we had our first Physical Therapy appointment. Maya's therapist, Alicia, is amazing. She worked with Maya for about 45 minutes and she does a great job of mixing work and play. It's kind of like Maya has her own personal trainer.


They worked on the whole body, but did focus on her legs more. She did exercises to strengthen her hip and practiced going up and down on her step stool. Alicia was very pleased and said that she felt like Maya had already improved since she had done the evaluation on Friday. Praise God!


In other family news, Rain lost one of her top teeth two days ago... well, I mean, Daddy pulled Rain's wiggly tooth out with some fishing line... This is a BIG deal for her! All of my kids have been late on loosing their teeth and she is the last person in her class to loose her top ones. The tooth fairy forgot to leave money in her pillow yesterday morning-- I guess I should call the 1800 number and complain :) But this morning she woke with this and very excited!


We have our post-op appointment today with Dr. Kup and an occupational therapist will be evaluating Maya on Monday, so I'll keep you posted on how that goes... Thanks for stopping by!


"Now faith is being sure of what we hope for and certain of what we do not see."
Hebrews 11:1

Tuesday, October 19, 2010

Life back to normal... sort of.

Last week was our first week on the road back to "normal". Maya had two days of Mother's Day Out and went for 1/2 days, and we should have had our last post-op appointment, but it got rescheduled. I was a little bummed because I'm anxious to find out specifically what she can and can't do... with her heart feeling much better she has a lot of energy and I think she's starting to get a little cabin fever. Our appointment is this Thursday, so hopefully she will get released then, and will be able to do some of her before surgery activities.

Everyday, when I watch her I think, "What a miracle". She is a living example of the power of prayer. We had a PT evaluation last Friday and her therapist is awesome. She comes to our house which is great because Maya feels comfortable. It will also give me ideas on ways to work with her here... She is recommending 2 days of PT a week, so that will probably start this week. OT should also be calling soon to evaluate her and we will have all that set up, too. Bring it on!!

I had Gruene Market Days over the weekend and it was probably one of the hardest markets I have done. I took the week off of Maya's surgery and the week after, so there was a ton of work to do. We worked our behinds off and it paid... we had the best market ever :) It was really hard to leave Maya, but she can't take me to kindergarten so we've got to start spending some time apart. It's just really hard when you've spent every waking minute together and gone through what we have. But Daddy and Memaw took great care of her... Thanks Memaw!!

On a business note, her are a few pics from our latest photo shoot. My friend Amber did an amazing job (as always)!








I'll keep you posted on what Dr. Kup says on Thursday...
Thank you for your prayers~ they are being answered!!

Wednesday, October 13, 2010

Typical



Our appointment with the neurologist was pretty typical... we waited an hour in the lobby and a little longer in the room when in walks a nurse practitioner who starts off the conversation by saying he is not qualified to talk about Maya's scans. We were a little disappointed.

He took her medical history and did a neuro exam which he said was pretty normal. She showed some weakness on the left side but he was amazed at how well she was doing. He wrote down our questions and said he would dictate them in the chart and Dr. T would call us.

I guess he saw the disappointment on our faces and when he asked what he could do, Kevin said, "I want to see the MRI. I want someone to show me and explain to me what happened that day and how much of her brain was effected." So... we have a new appointment on November 10th with Dr. T.

This has proved to be a pretty typical situation lately. It seems really hard to get the appointments we need and then the next available is often weeks away... Kevin made a comment in the car, "I can't imagine how hard this would be if she wasn't doing so well... what about those kids that have real emergencies?"

Maya was a doll the whole time... I guess waiting rooms and doctors is part of her thing right now. We see her surgeon Dr. Kup on Tuesday. This is pretty exciting because it will be our last appointment for a month! (not including physical therapy)

Overall, our life is getting back to normal. Maya went to school for a few hours by herself yesterday. We have spent a lot of time together and I knew it was going to be tough for her. I picked her up an hour early after Ms. Candy called me to tell me she was complaining of a headache. That miraculously disappeared when we got home :)

I have Gruene Market Days this weekend and I have been sewing so that I will have some stuff to sell. It's hard to believe its been a month already! Hopefully the weather will be nice and we will have a good turn-out.

If you are in the area, stop by and say hi!

Monday, October 11, 2010

The Brain




Today we have an appointment with Maya's neurologist at 10:45. We are anxious to hear his evaluation of her MRI and exam. She is doing so well, but has a hard time starting off the day. We are not sure if it is because she is just exhausted from surgery or if it has something to do with the stroke.

Keep us in your prayers as we learn just how much of her little head was affected... I'll give the full report when we get back home.

Thanks for all the prayers and support,
Brandy

Saturday, October 9, 2010

Play-doh Recipes



I've had a lot of requests for the Play-doh recipes so here they are!

Non-edible:PLAYDOH RECIPE THAT WILL LAST FOR 3 - 4 MONTHS

Stir together in a 2-quart pan:
1 Tablespoon oil
1 cup water

10 drops of food coloring

1 teaspoon of flavoring (orange, lemon, mint,etc.)

Then add

1 cup sifted flour (takes out the lumps)
1/2 cup salt
2 teaspoons of cream of tartar
Cook over medium to medium-high heat. At first it will seem like you have too much water but don't fret, it all cooks down to a big chunk of playdoh in about 3 minutes. Stir until it sticks together and then put on a cutting board to cool a little. Once you can touch it, knead it until it's completely smooth.


Edible (Maya's Favorite)

1 c. peanut butter
2/3-1 c. nonfat dry milk
2 tbsp. honey

Mix ingredients. Add enough powdered milk to make playdough dry enough to handle. When you are done playing, roll it into logs and roll in rice crispies... makes a great snack!

Click here for some other great recipes!

Thursday, October 7, 2010

Amazing Little Girl

The past two days have shown much improvement. Yesterday, when Kevin got home Maya said, "Daddy look! I can run now!" She really is getting so much better... She uses her left hand now without being prompted, though she still does not swing it when she walks. She still has coordination issues when she tries to grab things, and if she holds something in that hand it will most likely spill unless she pays constant attention to it. I think the greatest weakness overall is her shoulder, but that will get stronger over time as well.

I have to say I am quite impressed and amazed! Her movements have become much more fluid. And we've only been doing "Webb" therapy, ha! Sometimes I look at her and think, there is no way she just had open-heart surgery...

Here's a video of her walking on the trampoline yesterday. I think the bounciness is very forgiving on her knee and helps with her ankle and flexing her foot. She had a lot of fun and was dying to jump but I just don't think we're quite ready for that :)

video

I also wanted to say thank you to my friend Amber for the yummy lunch yesterday... we sure enjoyed your visit! Also, my friend Carol brought by an Edible Arrangement and some things for Maya that were just darling. We are blessed to have such wonderful people in our lives!

Wednesday, October 6, 2010

My Cup Runneth Over


Today we headed to San Antonio for an early appointment with our cardiologist, Dr. Brownlee. Maya loves him, and I'm pretty sure he feels the same way :)

They did all the usual... pulse ox, blood pressure and EKG. Everything looked normal. After listening to heart and finishing the exam, he decided that we need to stay on some medicine for a little while. There is still some extra fluid in her body (result of her heart issues before surgery) and he wants to keep her blood pressure controlled until her heart fully heals from all the stitches... probably another 6 months. Then we headed over to the treatment room for an echo cardiogram.

Dr. Brownlee was very talkative while doing the echo which is always a good sign. Sometimes he gets this serious look and I know that he's trying to "see" something and its time to be quiet... but not today!!

I have a big sense of relief knowing that he feels like this was "the best possible outcome". When I asked if she will need a ring put in later on, he said he hoped not. For now the valve is working fine with minimal leakage and we will pray as her heart grows the valve will grow appropriately.

I have to say that at this point I am so thankful. Her little heart is healing and the rest of the problems we will overcome with time. There are so many parents out there who have children in the hospital and that is their way of life. There are some that have had to say goodbye to their precious babies and I can not imagine. We are lucky.

A wonderful lady passed away on Sunday. She gave her all in a fight against an ugly disease and the Lord called her home... she leaves behind a loving husband and three small children. I can not imagine what they must all be going through. She was a good friend, an amazing mother and the world was a better place with her in it. I don't always understand the plan, but I know that God has one. It is times like these that make you fall to your knees in thankful humility.

While waiting for the doctor yesterday, Maya asked me to read her a book. She grabbed one from the shelf and it was a storybook of Psalm 23. When got almost to the end I stopped and fought back tears... my cup runneth over. I am truly blessed.

The 23rd Psalm

The Lord is my Shepherd; I shall not want.
He maketh me to lie down in green pastures:
He leadeth me beside the still waters.
He restoreth my soul:
He leadeth me in the paths of righteousness for His name' sake.

Yea, though I walk through the valley of the shadow of death,
I will fear no evil: For thou art with me;
Thy rod and thy staff, they comfort me.
Thou preparest a table before me in the presence of mine enemies;
Thou annointest my head with oil; My cup runneth over.

Surely goodness and mercy shall follow me all the days of my life,
and I will dwell in the House of the Lord forever.

Tuesday, October 5, 2010

Quick Update

The doctor's appointment was pretty standard... we went over all the details from her surgery and all medicines she is taking. She was examined and overall is doing really well. Everyone kept saying they could not believe it had only been a week since her surgery.

We got the referrals we needed: PT/OT, cardiologist, surgical and neurological. She also got a cream to help with the big rashes from the tape and bandages.

When I asked the doctor about her arm and leg tingling and hurting in the night, she said that is called paresthesia and it is common with people who have had strokes. The brain tries to send impulses to the nerves and and they don't respond so it feels like pins and needles. She said SOMETIMES it happens when feeling is starting to come back... but NOT to get our hopes up.

When we got home my friend Dianne dropped off a delicious meal... She even brought some chocolate brownies that were still warm. I was tempted to eat just those for dinner, but decided to be a good example and had the "real" food first. When I unpacked our bag of goodies, I found this cute pumpkin decorating kit in the bottom.


It didn't take long for the girls to get to work! They had so much fun decorating the pumpkins and this type of thing is so far off my radar right now, it was nice to have a fun craft for them to do together.


We used q-tips instead of the paint brush and it worked great. It made it easier to keep the paint colors separated too.


The finished product:

The girls had a great time and are really proud of their creations. Thanks Dianne for a fun evening!

Tomorrow we have an appointment with Dr. Brownlee at 8:15. Please keep us in your prayers as we go to get the follow-up on her heart. We've kind of put that on the back-burner since all this stroke stuff, but it is the reason she had surgery in the first place...

That's all for now-- tonight's play-dough menu was limey green and banana blue :)

School & Candy Corn

I took Maya to Kids Kare today for a quick visit. All her friends were working on a BIG purple get well poster when we got there. It was so sweet to see they were all happy to see her. She only made it a few days before her surgery and was a little hesitant to return, but once we were there she fell right into place.

We listened to Ms. Candy read a story about fall and then it was off for a mini recess. Her friend Alisandra was so sweet... she took Maya by the hand and we headed over to the swings. She also played on the play scape and went down a few slides. I think being in the environment with the other kids was really good for her.

She also got see all the other teachers that love her so much- I think it was good for everyone to see how well she is doing. Words like "stroke" are scary, and people are amazed how able she is.

Having said that, here's a little video of her playing the candy corn game (working on her left fine motor skills).

video

I wish I had some pictures to post of her day at school, but right now juggling her and the camera just isn't option :)

We see the doctor at 2:40, so hopefully I will have some good news to report later today! That's all for now...

Monday, October 4, 2010

Getting Caught Up

Well, we are finally starting to get a little settled in... Parker came home yesterday and it was nice to have us all together in one place. Maya is sleeping well for the most part, but we have to wake her up at 11pm and give her a dose of Motrin for inflammation. After that, she complains of of her arm and leg itching. To make matters worse, she has massive rashes from all the tape that held the lines into her little body... I guess her skin is too sensitive for that sticky stuff. Poor thing! Usually a little coaxing can get her back down, but she's been through so much- I'm just ready for her to be able to sleep in comfort.

We had a lazy Sunday, considered church but didn't think Maya is quite ready for that. Instead we caught up on sleep and worked most of the day on her fine motor skills. Yay Play-dough! Kevin took Rain to the farm for some Daddy time, which I think she thoroughly enjoyed. Then my friend Ame came over and brought Honey Baked ham, mac-n-cheese, croissants and lemon pie. Yum-my!

We had some visitors here and there and I think Maya has really enjoyed the attention. It makes her feel very special and loved. Our friends have been so generous with the notes and gifts--our house looks like a birthday party and Christmas put together!

Today we headed to H-E-B for a big out-of-the-house adventure. We picked up some Playdough ingredients. Ame had made some homemade dough for Maya and she just loved it! She emailed me the recipes and we were off and cooking. Maya's first request was the edible kind, so we turned this


into this! A darling gift arrived from the Urbanczyk's and it was just perfect for her new edible dough adventure. A mixing bowl, wooden spoon, rolling pin and oven mitt... in purple of coarse!

Here's one of Maya stirring the pot... she's doing really well.


We also had a visit from Ms. Candy, Maya's teacher at Kids Kare. Maya thought it was so neat that her teacher came by to bring her a gift and see how she was doing. It's always funny to watch kids when they see their teachers outside of school... I guess they assume that that is where they live:) Anyway, it made Maya's day to have that special visit.

Overall, I think she has improved some since even yesterday. We do have some concerns about her shoulder as today I noticed it started to droop more. Sure enough, Kevin sent me this and when he got home we figured out her shoulder has been dislocated. He popped it back in and it stayed for now, but who knows how long it will stay put. We have a doctor's appt. tomorrow to set up PT/OT and I can't wait to get started.

Thank you so much to all the folks on the Care Calendar. It is nice to able to play with Maya and keep a close eye on her instead of having to worry about what to feed my family. The Toneys brought a delicious roast over tonight-THANK YOU!! So if y'all see me and I've gained 10 pounds you know why, ha!

Well, now I'm off to make Pink Peppermint and Coconut Purple Playdough.
Wish me luck!

Brandy

Saturday, October 2, 2010

Home, Sweet Home

Here's Maya patiently waiting for the nurse to print the discharge papers. We told her we were going home and I think she thought, "Yeah, I believe that when I see it".

She was so good about waiting, and a pink flamingo with some beautiful flowers arrived form Uncle Bob & Aunt Betty. It was great timing and helped the with waiting. When the nurse finally came in, she was ready to go!

We put on these cute flip-flops that my friend Megan made for her and we were on our way!


Down the elevator and straight to the gift shop. We promised Maya a full shopping experience we she was done and she held us to it... we were happy to oblige:)


Here she is outside the hospital doors as we waited for daddy. She was so happy to see some real clouds, as some the ceiling tiles on her floor were painted like the sky. These were much better!


It was the longest drive home... Kevin slept maybe one hour last night and I slept a little more with Maya, but we are all worn out. I had promised Maya that I would ride home in the backseat with her and I kept my promise. Between the fatigue, my diet for the past few days and my tendency towards motion sickness, I was a mess when we got home. Luckily when my feet hit still land I recovered pretty quickly.

When we arrived there was a package on our door from The Biddison's, our neighbors, with lots of fun stuff like Play-Doh, dominos and coloring books.


Then Memaw and Pepaw brought Rain home and that was a real treat! Soon after they left, Rain's best friend and her family stopped by with a super neat Tinkerbell balloon basket filled with goodies.


I went to fill some prescriptions and when I got back Kevin was in desperate need of rest. So he is taking a nap, and I will soon feed the girls some delicious dinner from our friend Stuart. I can't wait!!

It feels so good to be home, but now that she is in her natural element, I feel like the problems are more pronounced. I honestly think that the only things that bother her right now are the symptoms from the stroke... she doesn't even blink an eye at her sternum, heart or any other area. It's hard to face that this is her reality now, and she's not just gonna spring back to her usual self. But bothers me more than it bothers her and there's something to be said for that. I have made an appt to set up physical therapy, so we can hopefully get that started right away.

For now, I am exhausted... but extremely happy to have my little girl home.

In Him,
Brandy

Headed Home Again!

The neurologist has been by and we are being discharged right now.

He confirmed that she'd had a small-moderate stroke on the right side of her brain.

He said he was encouraged by her age and relative "plasticity" of young brains and that the thalamus and basal ganglia were not affected.

Both he and Kup called this a watershed stroke. What this means is that it was not caused by a blockage, but by hypotension probably during the bypass. So, at some point, the little vessels out on the very tips did not have oxygenated blood in them for some period of time and that tissue is permanently damaged.

He said that most of the time this can be overcome by physical therapy and in most cases children with this injury end up being able to enjoy the things in life that almost everyone else does including having a family. There is no cognitive damage and she is still as sharp as a tack.

He said that some do not recover and we certainly should not expect her to be a star athlete.

We have already been working with her making her walk and use her left arm. She can walk about 30 yards at a time several times if she rests between, but then she will need to lay down for a while. Her left arm just sort of hangs at her side and she swings her left leg to walk, the knee hyperextends, and there is no push off of the left toes. Hopefully the physical therapists will be able to give us some methods and exercises to help with this. Right now we are just trying to get her strength back up.

She does not seem to think it's a very big deal. She is happy to be going home--hopefully for real this time--and we can't wait to have her there. I don't know what to expect when she starts playing with Rain and Parker.

I guess she will do what she has always done: She's made the best of what she has and never thought a second about what she didn't. Pretty good lesson.

So, here's what I have: A beautiful family, a little girl with a fixed heart, so much love and support from so many people, and more blessings than I deserve. Lucky I have Brandy and the kids to do all the deserving for me!

Brandy will take over posting again now as we enter the next and hopefully less intense phase of Maya's life. Thank you so much for your prayers and support.

Kevin

A little setback for the bravest little girl in the world

We got Maya in recovery about 10pm. That was ugly as it always is, but not so bad as it can be because they just used gas and there was no procedure other than the MRI and yet another IV insertion. Maya was brave, but this would be hard for an adult--much less a four year old. Uncle Scott showed up to lend his support which was appreciated.

From when she went under to when we saw her again was the longest hour or so that Brandy and I have spent together as the result would be one of three things: a bleed that was continuing to cause damage (which was unlikely), a minor stroke, or nothing at all.

The radiologist read the MRI and the doctor called us to say that there had been a temporary loss of oxygen in a part of the right side of her brain caused by a clot that had since cleared. It probably took place during surgery and once the damage was done, it was done.

On this day, that was great news. We will see the neurologist in the morning to see how extensive he thinks the damage is and what the prognosis is. Right now she has what I would call not quite paralysis--more like extreme weakness--in her left extremeties. There is nothing different about her face, speech, or faculties. She won't use her left hand unless you make her and when she does it is uncoordinated and weak. She can walk, but with a pretty good limp because her left foot is not doing what it should.

So, there it is. We don't know yet what it all means long term. We don't know yet if the damage is permanent or is something that can be rehabbed, but we do know that it is not getting worse and she is going to live. So, when she got all recovered from the anesthesia we sat out in the hall (we have a baby girl roommate and didn't want to wake her) and had dinner with her at 1am or so. She ate a piece of rolled up ham, cheetos, orange soda, and the delicious cream part out of the center of about six mini oreos. If she would've wanted anything in the world she would've gotten it. Brandy and I ate some good stuff Scott brought from Melissa. I guess people walking by thought we were nuts as the whole nursing staff knows that we just found out that Maya had a stroke and we're out there feeding her junk food and cutting up with a four year old four days after open heart surgery. We just had a little party out there and if they didn't like it I think they knew we didn't care and nobody said a word.

We got Maya's teeth brushed and put her down a little after 2am and she's happy as a lark. Right before I laid down she gave me a 'thumbs up,' Gig 'Em that would've made Old Sarge proud along wit a big old smile. She's heard everything that I've written here and is feeling this as well, but if she cares, she sure doesn't show it. She laughed tonight like she does with Rain when they're in the bathtub together and if you've got a heart, she can steal it in about 15 seconds. It's my admiration for her that finally breaks my heart and brings the tears at times like these when no one's looking. I think that whatever challenge this turns into will be met head on with that special moxie she carries around by the bushel and will be overcome with a shrug.

Brandy's laying next to her in her bed and I'm on the same 1967 model fold out chair torture device I slept on last night about 18 inches from Brandy. it's about 3:30 now. I'm wearing the clothes I put on Thursday morning because I slept in the room with Maya last night and it looked like we were heading home today before all this came about.

So, for me, nothing has changed. Maya was sick and is going to get better. Maybe this will take us longer to get over, but it's something we will get over. It's not getting over on us because no matter what, we're in it together: Parker, Rain, Maya, Brandy, and me...plus a whole lot of people out there that care about us and our God that lives in that little girl's giant heart.

Friday, October 1, 2010

We're not Going Home

We were set to go home after being told repeatedly that her not using her arm was no big deal after telling the assistants to Kup and Brownlee, the nurses, and the doctors on the surgical ward.

Today Brownlee stopped by and said after looking at her and testing her left side v. right side that he wanted an echocardiogram before we left. They did that and then Kup dropped by. His assistant was telling him all about how Maya was and I said, "Yeah, but we still have this concern about her left side."

Once I do that, Brandy then lays it all out. She explains the symptoms and Kup says we need to get her to a neurologist asap, tonight, and starts putting it together because it appears she has had a stroke. We need to make sure it was just a TIA and not an active bleed so we will need to get her a CT scan. Kind of like a head X-ray in that you don't have to sedate her and all that.

A little later Brownlee shows up to tell us the echo looks good and catches me about 15 minutes from a meltdown because we've heard nothing about getting this stuff done since Kup left. He takes over and puts it back on track and the floor doctor jumps on it.

So, we take Maya back to the room and get her set to eat. Brandy is putting the ketchup next to the chicken nuggets when the floor doctor comes in and says, "Has she had a bite yet?"

The neurologist wants a special MRI (not a simple CT) of the brain so she will have to be anesthetized...so no food or drink again. We just took the last IV out today. We have been telling her we were leaving and now we can't.

It's all a little much right now as we were sort of going to coast home tonight on fumes having this behind us. I know life's not fair, but Maya doesn't yet and I don't want that lesson to be this hard this early.

Right now she has like a very limited paralysis that in the very extremities of her left hand and foot. It is almost certainly something that can be rehabbed out. We just need to do the MRI to see what damage has been done--if any--and make sure it is not continuing.

So, they have an anesthesia team that is coming in for another stat case and they will be putting her under again hopefully some time not too long after 8 pm. I really hope they can do it with gas only instead of the narcotics as the recovery is so much easier. Lots of crying and stuff, but less stomach problems.

I will post more when I know more.

See that smile?

That's what you get when you tell a little girl that she gets to go home! Yep, that's right :) As long as there are no surprises on her latest chest x-ray we will be headed back to NB.

I'll update if there are any changes, but hopefully the next post will be from home!