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!!

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!

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

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!

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 :)



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!

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.

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 :)