Tuesday, August 26, 2014

Almost 1

We're just days away from Maia's 1st birthday... and many thoughts are going through my mind, some good, some not so good. Many thoughts that include flashbacks of what she's overcome, and also dreams of what her future may hold. She's come a long way. Many things have changed in her first year of life... Maia has physically changed so much with each procedure and surgery, and she's also grown from a tiny infant to a cute, chubby baby girl... and yet many things have remained the same, including her will to live and everyone's love for her.

After our last family meeting, it took me awhile to let everything that was talked about sink in. Dr. Patrick who was the attending last week, mentioned things like "quality of life" and "the end is near" and "she will never go home again." When I thought about what all that meant, it didn't really change much for me. It wasn't anything new that we haven't heard before... but yet hearing it discussed all over again was still very bothersome, and it hurt to hear. In some ways, it almost felt like they were ready to give up because it was only a matter of time before she would die. It was as if they somehow knew she wasn't going to make it in the next few days... it was a sad meeting. I guess taking into consideration what Maia's already been through and already overcome, I started to wonder if she had it in her to do it again... would she even make it to her 1st birthday? Should we not decorate her room? Should we not plan on having what we thought was an already small celebration? So many things started running through my mind... but every time I look at her, I still see so much fight in her. So I know we've made the right decision whenever we're asked what we want to do. Just like always, we will continue to fight... until she can fight no more, or until we feel she is suffering. Now is not the time to give up. We don't want her to be in the same condition, with no improvement, months from now... so we've made it known that we want to be more aggressive when it comes to her treatments. If she is to die, she will die fighting... but we will also keep in mind her comfort level. All that sounds pretty tricky, but if you know Maia and her personality, she lets you know what she wants or doesn't want, and right now she doesn't want to give up. She's always been very determined and quite feisty when it comes to letting you know her preferences.

"Sleep peeling" the tape off her face
Lately she's been very irritable and agitated, and for good reason. Although she loves for anything and everything to be in her mouth, one exception has always been her breathing tube. If she could pull it out herself, she would! And she hasn't stopped trying either. She's had it in her mouth for at least 2 months now and is showing no signs of getting used to it, especially since her top 2 teeth have come out! This is one reason her hands and arms need to restrained most of the time. Sometimes we'll let her loose and give her some time with her arms free, but almost always, she will attempt to grab either her breathing tube or the tape on her face that holds the tube. I've even caught her doing it in her sleep! She had managed to slip her hand out of the ties and was trying to peel the tape off her face. It was kind of funny to watch. In my opinion, having this breathing tube in her mouth is one of the things that makes her uncomfortable, which is why we've been trying to push for a trach the last few weeks. But her vent settings have gradually increased making it more risky to get a trach right now. Although getting a trach won't solve all of her discomfort problems, we know it will make her more comfortable and happy to get that tube out of her mouth. So we're hoping to she can improve enough and get her vent settings lower, so she can get her trach sooner rather than later. We also have to remind ourselves sometimes that she is a baby, and will still go through normal baby stuff... like teething. Since she can't suck on her fingers right now, her new soothing method is chewing on the oral care sponge! We usually just add a few drops of water and leave it in her mouth for her to chew on. If you take it away, she will look for it and throw a fit until you put it back in her mouth. Another thing that usually calms her down is putting her in prone position (on her tummy). Almost always it relaxes her and she'll just go to sleep.

Tummy time = nap time

Time for pigtails!

For the last 2 weeks, it seems like Maia's been stuck in a continuous cycle. Each time she gets irritated and mad, this causes her O2 sats to drop and CO2 to go up. She eventually settles down, but not always right away. So it seems like she goes through phases of getting better (more stable), then falling apart, then having everyone scramble to help her out, whether it be by giving her more meds or increasing her vent settings. Lately, this has been happening about once a day. It then continues daily and she spends most of her day having to recover from all that happened the previous day. Looking at the big picture, it's almost like she's running on a treadmill, not getting anywhere... and each day, her pace and distance slowly decreases. 

This leads me to the topics of comfort and care. It was also suggested at our last meeting to make comfort a priority. Taking that into consideration, we asked to have a team of her regular nurses put together. Not that some nurses are better than others, but after being there for almost a year, Maia has naturally developed an obvious bond with some of the nurses. They seem to know her better, know her personality, and know how to comfort her. Whether it's with the sound of their voice or the touch of their hands or even just the eye contact between them, they provide a sense of comfort, relief, and trust that doesn't happen with just anyone. Maia will almost always let you know by giving you a look, if she doesn't know you, like you, or trust you! It's somewhat difficult to describe, but it's one of those things that "you'll know it, when you see it." And we've seen it many times with the nurses Maia feels comfortable with. Since Maia has had problems keeping her O2 sats up, especially when she gets mad, it's a normal reaction to give her something (more meds) to help her recover. But lately we've noticed that if you just give Maia a few minutes to settle, and give her a chance to calm down, she's able to recover on her own without any additional "as needed" meds (PRNs). For us, seeing her nice and calm with good sats is better than seeing her all drugged up with good sats. Of course, there are times when all of the above doesn't work, and they have to resort to PRNs to calm her down and bring her sats up. But throughout her stay at 7 East, I think Maia's had just about every nurse at least once! All of them are great and more than capable of taking care of Maia. It's also a big plus that the nurses have a great sense of humor, because hanging around us all day, it's hard not to laugh with us sometimes!

To all the nurses, especially those at 7 East...

One reason I feel that we should continue to fight is that Maia is unpredictable, always has been and probably always will be. When you expect her to do one thing, she does another. Of course this unpredictability hasn't always been to our advantage. This is why her team of Drs find it hard to treat her because she seems to react differently to each chosen course of treatment! Which is why I feel people shouldn't count her out! You don't know what she's going to do next... all the times the Drs thought she wasn't going to make it, she did. Despite having all the odds against her, she's proven many wrong. So why should we stop fighting now? We should continue to fight strong, now more than ever... and if it's God's plan to have Maia stay with us, then we accept that... and if it's not, then we accept that God has other plans for Maia, better plans. 

I couldn't help but feel so sad after the last family meeting. It hurt a lot to hear that they thought Maia would never come home again, that her end was near. I remember how hard it was to hold Marissa in my arms and say goodbye, telling her how sorry I was that we couldn't take her home... am I going to have to do that again? I hope and pray that I don't have to. I guess that's why I continue to live day by day and try not to think too much or too far ahead. If these next few days or weeks with Maia end up being our last, I don't want to spend them being sad and always crying. Instead I want to be happy... and show Maia how much she's loved, and how happy she's made me, and everyone around her.

Sunday, August 24, 2014

A Big Heart from Big Brother

From Good to Fighting

Marcus made a video for Maia. He thought about how to make it, what to say and asked us to film him. We value every second, minute, hour, day and month with Maia, and we have had 11 birthdays already, one for each month. She is finally turning 1 year old. We were planning a party before she went back into the hospital, with live bands, a magician, face painters, balloon guy, hula dancers, DJ, food and ice cream truck for 400 people plus, which included all of you on the Mighty Maia Fight Team. Please watch Marcus' video and send a birthday card for Maia... it means so much to him for her.

We had our family meeting yesterday the 22nd, like we do every Friday . As we all know Maia is a really sick baby and as we have said before, her doing good, okay, alright is not what you think. What we mean is that she is alive and breathing today, at that moment. In this week's meeting, "end of life" was the topic. The Dr's. think she will never come home, never be off of ventilator support and her end of life is coming. How long??? We do not know. But we were told before that she would never come home, that her odds of life were ZERO and she proved everyone wrong. After the scare 3 weeks ago we know it can happen any day at anytime. We're not giving up, we won't leave her side, we won't stop fighting, for and with Maia.

Through our adventure we have always planted little seeds in Marcus' mind. The "just in case" seeds. I said 3 weeks ago that Marcus knew coming into Maia's room that things were not right. People were not talking normally, the monitors did not read what they should be reading. Marcus is wise in many ways and I knew when he entered the room, within seconds he knew Maia was close to leaving us. He did not say anything nor did he show it to others, but I know my son and I know he knew that Maia was about to go to heaven.

We left the hospital today, Saturday the 23rd and went and ate lunch and I asked Marcus "you know Maia is really sick right?" He said "Yes I do dad." So later when we were driving I asked him "what kind of sick is Maia?" Marcus answered "she can die at anytime." I then changed the subject and talked about the milkshakes we had at lunch. I was somewhat in shock he knew this and that in his mind, through his tone of voice, he like us values each second with her. I worry about Marcus emotions as he is about to go into 1st grade. When he was 4 and in preschool we dropped him off as a boy learning and watching his mom go through pregnancy. He watched her body change, her tummy get big and he did all the things an older sibling would do, kissed her belly, talked to the baby inside. He would remind mom to take her Iron pills and make sure she did not eat shell fish as she is allergic. Then his sister Marissa was born and became an angel a week before school ended. Then everything he has gone through with Maia I worry. I love him so much. I worry about Rizza, as a woman caring 2 babies that have had such health issues and if Maia passes how she would take it. I love her to.

Recently I have been thinking about everyone, Marcus, Rizza, the staff at UCSF, all our Facebook, Instagram and blog followers, you.  I talked about it in the meeting as I am worried about everyone's feelings, emotions and faith. If Maia is to become an angel with Marissa, it will be hard on me. What I worry about is you, all of you. Don't lose your faith because if it does happen, this is what God has planned for us, again. All that we have prayed for, fought for, liked and commented on, is it helping? "HELL YES!!!" The kind words of inspiration, confidence, and the will to fight has all mattered. Again we're not giving up but we know that there has been no improvement in Maia's lungs. Her heart is doing good and no meds are needed. Although she still needs diuretics, her kidneys are okay. It's her lungs. Unless an act of God happens and her lungs heal better than before we came back to the hospital, her end of life is near. She cannot survive getting another cold, or any kind of sickness or infection. She cannot survive by continuously injecting meds into her to keep her stable. She cannot survive all that her body is going through. I offer any part of my body to God, even my life if it would help Maia heal. Maia has not been suffering but has been very irritated, upset, and just not comfortable lately. In the last month I cannot count the minutes on one hand that I have seen her eyes in any kind of happy. Maia has been happy to see us, happy we're there, happy to see her nurse family, happy to see all the visitors that have come by to see her, and again that has helped her be strong.

Thank you to those who already sent cards and for everyone that is sending cards. This means so much to Marcus.. So much to us and a lot to Maia.

Tuesday, August 12, 2014

That Saturday Morning...

Saturday, August 2, 2014

It's been difficult to think back to that Saturday morning, but yet our minds drift back to what happened so easily... reliving that day is almost too easy! It was a reality check, an obvious reminder of how fragile life is.

The perfect combination of
Princess & Warrior

It started out a typical Saturday morning for us as we arrived at the hospital after 9:00am. Before heading into Maia's room, we stopped in the family kitchen to call and check on the little old lady that hit our car the day before. Gordon talked to her and she said she was all right, and we reassured her that we were also ok, but it was hard for her to talk on the phone because she had difficulty hearing. So she said she'd have her daughter call us back.

We headed in to see Maia and everything seemed fine. We were just getting settled in, putting all our things down and rearranging the chairs in the room. Within about 5 minutes, Maia's heart rate began to slowly go down, along with her blood pressure and oxygen sats. It didn't seem too serious at first until the nurse mentioned that this was the third time Maia has done this in the last several hours. Then the next thing I know, nurses and Drs flooded her room... and for the first time in a long time, I was actually worried and scared. Tears began rolling down my cheeks and I told Gordon that we should step outside because I felt we were in the way. So as the nurses and Drs did their thing, we patiently watched from outside Maia's room. She was having another "party" in her room, as we like to say. But this time it was different.

Maia and her new monkey pal

There was a sense of urgency with this particular party. The orange emergency bag was brought in... we've seen this bag numerous times whenever a procedure is done, or when Maia travels out of her room to the operating room. But this was the first time I've seen the bag open and ready. A table was set up with cardiac arrest related meds and equipment. The room across from Maia was empty so the Drs, along with the social worker, brought us in there to talk. The day before, we had ourpoll usual family meeting with Dr. Sandrijn, one of the critical care ICU attendings, and she mentioned that down the line, we should be making decisions regarding Maia's care, whether to be more aggressive or back off some of her treatments. Little did we all know, decisions would be made that following day! They wanted us to know what all our options were, however, a decision needed to be made now... Maia had already had 2 of these moments in which her heart seemed to slow down, which brought down her blood pressure and oxygen sats. This was extremely alarming because it could mean that her heart, which was the main organ keeping her strong through everything else, was now beginning to show signs of needing help... the Drs were afraid that all of Maia's complications were beginning to take a toll on her heart, and she needed help now. I will forever remember the Dr.'s words "... if we don't do something now, she might not make it through the night." 
A crowded room

The Drs asked if we wanted to put her back on life support, the ECLS/ECMO circuit. She had just been taken off the circuit about 2 weeks prior to all of this. Since we believed it was necessary to save her life by putting her back on life support, we agreed to go ahead and do it. So Dr. Neil Cambronero, one of the cardiac surgeons, told us they would go ahead and start setting up in Maia's room, since they thought it was too risky to have her make the trip to the OR. The same type of cannulas that were used last time, would again be placed into her neck. However, after about 20 minutes, the plan changed... we had another meeting with the Drs, who informed us that Maia's team of Drs were all texting and calling in with their opinions. They all agreed that putting Maia back on the ECLS circuit would do more harm than good. They explained that with Maia's physiology, their would be no benefit to put her back on life support. Which is why after 2 weeks on the ECLS circuit, mainly for lung support, her lungs did not improve like the Drs had originally hoped. So they expected the same thing to happen if we were to put her back on the circuit. So after everything was thoroughly explained to us, we decided against putting her back on life support. The Drs made sure we understood that this didn't mean any of them were giving up. We all would continue to fight for Maia and the Drs would continue to do everything they can, we just all agreed we wouldn't put her back on life support... they also brought up the fact that if Maia was on the circuit, and something were to happen, we would not be able to hold her, which is something they all felt Maia, and us, deserved... and if it came down to it, we made sure to let them know, that we did not want Maia to suffer. If her heart stops beating, we did not want any chest compressions done, or any electrical shocks to her heart. She has already been through so much, and survived so much, that if her heart stopped beating, it was a sign from Maia that she was done... that she gave it her all, that she was tired, and it was time for her to rest.

Catching up on some beauty sleep

As the party continued in Maia's room, we continued our discussion with her Drs in the empty room across from Maia's. Dr. Sandrijn suggested we try a steroid treatment. It was something she had been thinking about bringing up to Maia's team of Drs, and now would be an opportune time, since there is a risk of infection and Maia was already taking antibiotics. Although there is no proven research that this would help Maia's lungs, the logical thinking behind steroids is that it helps to reduce inflammation. If there is any inflammation in Maia's lungs that is causing her lungs to stay collapsed, the steroids would help. So we were on board with this aggressive form of treatment. They also let us know that they were more than willing to think out of the box when it comes to Maia. There is no other baby like her, so they honestly don't know what to expect when it comes to her and the treatments they've done and will try and do. Maia is very unpredictable and does not go by the book... she is writing her own book! We then began to end this highly emotional meeting with some personal thoughts and words of encouragement... we first thanked Maia's team of Drs and nurses. There really aren't enough words to describe what they have done, and what they continue to do. Saying "thank you" is just an outrageous understatement. And as if I wasn't crying enough that morning, the Drs thanked us... for inspiring them, the nurses, the entire staff, and everyone around us. They said we make their job easy, we help make taking care of Maia easy by always being positive, and that it has rubbed off and affected everyone in the unit. Then the unexpected happened... the Drs began to cry, as they told us how they too want the best for Maia, how they also want her to continue to fight, and that they would fight also... how it was impossible for them to not get attached because they've cared for her and watched her grow and survive for almost a year now. It was truly a humbling experience.

Such cute lil feet

After Maia was stable we were able to go back into her room. She was now on heart meds, Epinephrine and Dopamine, to help her blood pressure, and the steroids were also started. Her vent settings were increased for more support and her nitric was increased to 20. She was sedated to help her rest, and the Drs continuously tweaked her dosages of her sedative Dex (dexmedetomidine), along with her heart meds and diuretics, until they could find the right combination that was both effective and made her happy. Her feeds were stopped and she was eventually switched to an IV drip of TPN (total parenteral nutrition). All these extra meds means more fluid intake for an already edematous Maia, so Drs had some of her meds concentrated to reduce the volume of the fluids she's taking in.I They also changed her diuretic from Lasix (furosemide) to Bumex (bumetanide), for the same purpose of switching to a more potent concentrated dosage. 

Checking in on Maia after she was stabilized

Meanwhile, Gordon spent the next several hours trying to get a hold of family and friends, to personally let them know what was going on with Maia. I also decided to put up a post on Facebook to update everyone and ask for prayers, it couldn't hurt! Gordon made calls and sent out texts, encouraging family and friends to visit since we didn't know what was going to happen. We tried not to sound desperate and give too much detail, however, we did want to inform them about Maia, and have them visit, especially if they had never met her. Another one of our concerns was my parents, who had plans for an overnight trip to Monterey with my dad's cousins who were visiting. We didn't want them to cancel or change their plans, but we didn't want to leave them completely in the dark about Maia. More importantly, we didn't want them to worry and focus on the negative things that could happen, which they are very good at doing. We were determined to focus on the positive, just like we always do. So my brother picked them up and brought them to the hospital, along with Marcus, who was spending the day with his Nino Dada. We let them know that Maia had gotten sicker, but was stable for now. We also didn't give too much information to Marcus because we didn't want to scare him. Their visit at the hospital was short and sweet, which worked out fine. They were able to see Maia before going out of town. Marcus seemed to sense that something wasn't right and somewhat avoided Maia, as he played with his Legos. 

Maia didn't like all her gifts
Stare down with her giraffe

As the day went on, we had more visitors come through... almost all shed tears as we described what went on that morning. We also received countless texts and calls, offering prayers, support, and words of encouragement. During the next few days, more family and friends came to visit, and as much as we enjoyed seeing everyone, it was as if Maia loved it even more!!

Maia and her braids

It's been over a week now since that Saturday... and Maia seems to be responding well to both her meds and seeing new faces that love and care for her. She is slowly being weaned off of the vent and all her meds, including the steroids. She continues to get regular x-rays to check her lungs and it was a pleasant surprise to see some improvement after a few days of being on the steroids. Drs still aren't sure how the steroids played a part in all of this. Maia seems to like her blood pressure on the higher side, which keeps her oxygen sats up. However, when she gets mad and agitated, her sats go down and her CO2 goes up... a bad combination. So it's important to keep her happy and relaxed, which gets pretty complicated when trying to wean her off meds. Plus, she's also teething... something we all seem to forget amidst the other priorities! So part of her fussiness and irritation can simply be explained because of teeth! Her vent settings have gone down considerably and she's requiring less vent support. She's also been weaned off of the nitric since her drama on Saturday, but she still has a long way to go in the respiratory department, especially with her collapsed lungs and ARDS (acute respiratory distress syndrome). With the help of her diuretics, she is less swollen now, but they've had to adjust the dosage several times because they don't want to stress out her already fragile kidneys. She's been peeing so much that they've had to give her extra potassium at times. We would occasionally joke that this all started when one of her nurses put many tiny braids in her hair and this was all just a bad reaction to her not liking the braids! We kept them in for several days, but they were starting to remind me of Coolio, and they were looking like dreadlocks so we took them out Sunday. Since then, Maia is doing much better! But in reality, in the big picture, she's made little progress considering all her setbacks. But she's showing signs of improvement... no matter how tiny the steps she's making, they are steps forward, and a sign that she wants to continue the fight.

Maia loves sucking on a sponge on
a stick, it's for cleaning her mouth
but she uses it for teething

Once again, we want to thank everyone for the outpouring of love, support and prayers... during both the good times and the difficult times. Many of you have told us that it's been hard to express whatever you're feeling and we want you to know that it's ok... just be yourself... our circumstances may have changed but we haven't! We are aware that anything can happen and we are accepting of whatever God has planned for us and Maia. So as I mentioned earlier, we're encouraging family and friends to visit. We feel it's brought renewed strength to Maia to see the faces of those that love and care for her... to know who is fighting right along with her. 

Jeremiah 29:11
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.

Wednesday, August 6, 2014

When it rains it pours

On Friday we had our normal family meeting which this one I did attend, the last couple I missed since I stayed home to spend time with Marcus, to make sure he knows we love him and he feels he gets just as much attention as Maia. After the meeting we went to my eye Dr. appointment, then after, we were on our way to Marcus' Taekwondo. While making a left through the intersection we were hit by another car, pushing us through the intersection towards the light pole, butt end of car leading us as the car that hit us was pushing us, and you can hear the tires screeching from being sideways. Right after being hit, I looked and saw the pole, traffic at the intersection, the center island pole. I looked in the rear view mirror and saw no car, looked in side mirror as I looked at Rizza and saw a car in Marcus' door. Without panic, I then looked back at Marcus and he was safe, gained control, all within the 2 or 3 seconds that this happened. Marcus did say later that Marissa helped push the car straight, and that he saw her. We pulled over and it was a little old lady that hit us and she was shaken up, but safe and not hurt. Marcus did jump out of the car and was yelling "that was awesome!!!" while raising his fist in the air. Poor lady, she could not hear him, we could only imagine what she was thinking. Well after we exchanged info with her and the witness that stated she clearly did not look and she just merged over into us, we made sure that the little old lady was calm enough to drive to her hair appointment. She made it to her hair appointment and Marcus made it to Taekwondo on time.

Saturday morning.

We were off to the hospital as we do everyday. Stopped by Philz Coffee Mission,
and got us our cup of love and some for our cousins that were going to take Marcus for the day, thank you J, Rachyl, Jaeda and Ezrah. We got to the hospital and we called the little old lady that hit us to make sure she was okay and to ensure her we were okay. Then when we walked into the unit it all went crazy, where Maia took a turn for the worst. Maia's lungs were filled up and her heart rate, blood pressure and oxygen all went down. Dr's did not expect Maia to make it through the day and told us to prepare, as all of us started crying. Rizza will go more into detail in her blog post. Between all the prayers, the Dr's putting their heads together, nurse Chrisma taking car of Maia and us as parents making the best decisions for Maia, she is still here, still fighting, still living and warming all our hearts.

Through all of this Marcus is growing in a way that any parent would be proud.
We do always remember that he is just a kid. It all started when he was 4-1/2. When we told him he was going to have a new brother or sister. At first his OCS (Only Child Syndrome) came out. As always, he did want a sibling. We asked what he wanted, boy or girl, and he was undecided as we still did not know at the time. After going to Dr. appointments with us and just talking with Marcus he said he "wanted a girl". He even told us if we have a boy we should save the receipt and take him back, funny kid. One time I told him that we would have to move his car seat from the &;middle and put him on the side so his sister can be on the other side and he said "just put her in the trunk". This kid. I told him we never put you in the trunk! As the pregnancy went on he loved his little sister in mom's tummy.

Then in the third trimester after we got an official diagnosis, we had to let Marcus know that his little sister was going to be born and become an angel. That took time and took many different ways of explaining for a 5 year old to understand and accept, and this all happened while in preschool. Throughout transitional kindergarten, he always had his angel, Marissa by his side and would see her and play with her. We would even go out to dinner and he would always tell the host, table for 4 and get mad at the waiter if they took her place setting away.

Then we were having another baby, another girl. As you know in previous posts,
Marcus named his little sister, Maia, and her nickname "Mighty Maia." He was so excited and happy to have a little sister. As life continued and he was going to enter kindergarten now, we had to again talk to him about his new little sister, Maia. This time his sister was not going to be become an angel. (At least the diagnosis was not fatal.) Moving along, he was just happy to have a sister, a sibling, a little buddy, to teach her everything he knows. For almost a year now, he has been by her side, in her crib, cheering and praying for Maia, to be strong and to fight, and to be able to come home and stay home


As parents we do our best to make sure Marcus knows we love him as much as Marissa and Maia throughout everything our family has been through. Sometimes it's hard since he does not know how to explain how he feels, what his emotions are what he is thinking and why. We do, daddy and Marcus days, and we go and do whatever Marcus wants, usually its going to DB, Dave and Busters. I love it because its hours of video games, eating bad and just hanging out with my little buddy, Marcus. We also have kept him busy, in T-ball, Taekwondo where he earned his red belt, and we walk, ride our bikes and play in bay and mud. 

There has been days that he acts out after we leave the hospital, but again he is a kid and we recognize that this is not just being bad, he does not know how to express himself. We still will talk to him about the behavior and let him know we're all sad and hurting too but we can't act out. He understands.

Marcus most recently made it into the Guinness Book of World Records, for the most pizzas tossed, at Tony Pizza Napoletana in SF. Great fun, great

In a couple Sundays from now, we're having a Marcus day, and we are inviting friends and family we know with kids around his age, to come over, eat pizza and we're having a birdhouse painting party all for Marcus, for being the best big brother anyone could have. So throughout all this he knows that everyone loves him, adores him and that he is the best big brother to Maia. I love you Marcus.

During and after our scare, we've had many family members and friends come by to see Maia and cheer her on. Each group that has come by we've sat them all down in the waiting room first and went over a brief update on how Maia is doing. I did have to remind everyone that Maia is a sick baby, and as good as she looks, she is still very sick, despite looking good. But her good is not what we would think. Each day she may be good, but she is not improving. As much as I do not want to say this and as much as we do not want it to happen, we have to always remember Maia is a sick baby, and I have to remind myself, my family and everyone that Maia can become an angel like Marissa. With all the prayers, all the support and all that 7 East does and has done, Maia is still with us, still kicking and making faces through her little Hannibal Lector mask. She is a strong little fighter that is growing in size, and growing in our hearts. I do thank everyone that has come to see Maia as we have noticed a huge difference in her eyes and in her look since she's seen everyone in <b>person</b> and it has made her even stronger to know that she is loved by so many. The analogy I use to describe coming to visit Maia, is like going to a football game. You can watch it on TV but when you see it in person is a completely different experience. To walk the steps, to smell the popcorn, see the field and feel it when someone gets hit, the noise of the crowd in your ears, there is no comparison. When visiting Maia, you go through the frustration of traffic, parking, the walk down the halls, having to go through security, the elevator ride, seeing the staff all in scrubs, entering the doors to Maia's room, the smell of the hand sanitize, seeing all the machines and hearing their different noises, seeing the displays all working together, with their different beeps, tones and numbers popping up, all to keep Maia stable and alive.

One of the many people who visited this weekend was my sister Julie... thank you
for coming. She asked me "What is your best memory to date of Maia?" I told her the 2 1/2 weeks Maia was home. The driving in the car and her just looking at the world and not looking at the ceiling of the hospital. Her sleeping in our room, walking up to her, her at home smell, taking care of her. Laying on the floor playing and watching TV with Marcus. Being able to take walks, take her to the store, the park, Marcus' Taekwondo, and just hanging out in the garage with her. The smiles she had and the smiles she gave us. Priceless. Fondest memories.

Through this weekend and for the rest of our kids lives, we are and always will be positive, caring and right by Maia and Marcus side no matter what. We love our kids with all our hearts and would do anything for them. God Bless everyone for supporting us, praying for us and following our journey. This Blog is Dedicated to Marissa and to big brother Marcus as he starts school in less than a month and he has been so brave, strong and loving over the past 2 plus years.

I also made a video about faith. Song by Kutless What Faith Can Do. Also is a couple other videos made with Maia click link below