Life's Lessons Are Rarely Easy

Mateo will be turning 2 next week. I cannot believe I am the mother of a (almost) 2 year old! There was a time when I didn't know if I would ever see this day. Or that my son would ever see this day. And while I am excited...ecstatic really...there is a little bit of dread under all that excitement. The more days that pass, we are brought closer to what I call "the unknown". Right now, we're doing great...health-wise. Mateo had a glowing report from his cardiologist at our last visit and I don't want that to change. We're in, what is called, the "honeymoon stage"....the period of time between Mateo's 2nd and 3rd surgeries. I don't want that 3rd surgery to come because I don't know what lies beyond that for us.

I have always been a person who is very aware of mortality. Aware that life doesn't last forever. That time slips away so fast and I can never get it back. That no matter how long the days seem, the years are gone in a blink of an eye. And this awareness has reached its fullest after having my son. I had all these fears that his life was going to be gone before he even got to live it.

But here we are.....a week from his 2nd birthday. And what a ride these last 2 years have been! He has brought me more joy than I have ever known. More fear, more sadness, more love, more laughter....more quality of life.....than I have ever known. That's a lot to go through in just 2 years. Only 104 weeks. Roughly 730 days.

The dread lies in knowing how quickly he will go from being my little boy to being my big boy...my teenager....my grown man. There were so many days that I wished he could just stay my little baby. Now I'm wishing he could just stay "my little boy".

And while I want to turn back time, I am overjoyed at how much he has grown. He learns so fast! It amazes me every day how lightening-fast his brain seems to work and I often wish I had a tenth of that now! I am surprised every day by something he does. Something he comprehends. Something he puts together on his own. Words that he says that I didn't know he knew....and using them in the right context! It amazes me and makes me so PROUD. And so thankful to God that he let me keep this little miracle boy.

The truth is, every stage with Mateo has been fun. Its so new and exciting. To be able to see the world through a toddler's eyes is a gift. Everything is fresh and new.

I have also learned a lot about myself in these last 2 years. I found strength that I didn't know existed. I found out who I am. I learned who I am as myself. As a wife. As a Christian. As a friend. I learned a lot about the strength I have in my marriage and in my faith. I learned that I have a whole world full of support and love...and when I painfully fell to my knees, so many were there to lift me back to my feet. If I learned all of this in only 2 years, how much more will I find out in the next 2 years? The next 4 years? The next 10? Yes, life is a learning process.

And I wonder what life lessons Mateo will learn. So I am excited to celebrate his 2 year mark of life. He fought for this tooth and nail and deserves to celebrate. And as much as I want to push away the coming years.....at least for a little bit.......I am excited to watch him grow. As the song says, "No, life ain't always beautiful, but its a beautiful ride."

God Is Good!

Looking over the last year and blessings for the New Year ahead!

We are looking forward to Christmas and the New Year. We pray that everyone has a safe holiday and that God would pour his blessings on them throughout the next year!

Looking back, this last year has been a wondeful one. Mateo only had 1 hospitalization, which I don't even count since it was only for one night and it was unnecessary. He has had no surgeries or procedures and all his cardiolgy visits have checked out wonderfully. Our only issues we had to deal with was his teething. It seemed that every time he got in a tooth, he'd get sick with a cold or fever. So, every month, he got sick with something. But on December 21st, his final tooth came in....at least, until the 2-year molars start up. So we're hoping for a healthy 2010!

At Mateo's last cardiologist appointment (November 9th), his doctor said that his heart function is great and there's no valve leakage, but that he will most likely have the Fontan surgery in the upcoming summer. Prayers that it all goes well!

The one sad happening of this last year is the passing of Mel's father. He passed away suddenly on December 12th of cardiac arrest. It hit the family hard because it was not expected. Mel just got back from being with his mom for a week and a half to help with laying his dad to rest. It was heartbreaking and we hope to keep our happy memories of him all life long. Mel's mom will be moving in with us next year, possibly February. I am excited for her to get to know Mateo and for him to get to know his Grandma.

SO, we have some big changes for next year and we are hoping for the best out of all situations. Please keep us in your prayers, we'll be doing likewise for you!

Merry Christmas and God Bless!

Getting so big!

I decided to weigh and measure Mateo today. He is 31" tall (almost 3 feet now!) and weighs a good 24 pounds. He has gained almost 1 1/2 pounds in 2 weeks. That's awesome! He had lost so much weight from when he had the swine flu and has finally gained it all back, plus some. He's been eating a lot more the last few days (finally) and just doing much better all around.

I can hardly believe how much he is learning lately. It seems that he is picking up on things and putting it all together with lightening speed. He is "talking" a whole lot more than he used to. Granted, its his own jibber jabber that neither Mel nor myself understand, but its cute and its all the time. One of the purest sounds I can think of, aside from Mateo's contagious laughter. It makes me smile just thinking about it.

He is also figuring things out faster and with much more ease. He used to get so frustrated when something wouldn't work the way he wanted to. He still gets frustrated easily, but its a lot less frequently. He works on things until he figures it out and when he does.....he gets SO excited! He had a toy out tonight.....one of those toys with the buttons, pull switches and knobs that, when done correctly, makes a little toy pop up........every time he figured out how to manuever one of those knobs or push one of the buttons he would do a little dance when the toy popped up. It was hilarious. Mel and I had a good laugh over it all.

Mateo seems to be understanding verbal commands a lot more too. I am always amazed when I tell him to do something and he does it right away. Sometimes I'm shocked because I hadn't realized how quickly he was catching on to an actual language. I told him today to bring Mama his book and I would read it to him. He immediately picked up his book and walked over to me, handed it to me and crawled into my lap. Now, I'm sure he didn't understand EVERYthing I said, but I know he understands the words "book", "Mama" and possibly even "read"....and I just find it so neat how he is putting all these things together and understanding it all. It absolutely fascinates me. I think I get as excited over these things as he does....if not more!

The only down side to all this (besides the fact that my baby is growing up!) I have a feeling that all this learning is keeping Mateo wired. He has had so much energy lately. I don't mean to complain, because I LOVE knowing he has energy. No energy can be a bad sign for heart function. But he is SO on-the-go all....day.....long. He has been waking up at night, wanting to play (like around midnight....so NOT play time for mommy). When we put him down for bed at night, he cries and cried and cries like he's not tired and doesn't want to go to sleep. Because of this, he's been sleeping in til 10:30am (usually he's up by 8am), taking late naps (or no nap at all) and not wanting to go to bed until 11pm. His whole schedule is completely off right now. BUT....he's eating good. LOL I am so happy about that right now! I think Mateo is just learning so much he doesn't want to stop. He has realized how much exploring he has to do...and I really am looking forward to doing that with him....even if it means little sleep for now :)

The Dreaded Swine Flu

Yep. Mateo had it. Swine flu. Since he is in the high risk category, I was really worried about him getting it. It ended up not being a big deal for us.

Mateo came down with a low-grade fever and a cough. I didn't think too much of it since one of our friend's daughters had the same symptoms and tested negative for flu and swine flu. But the following night, one of my other friends called to tell me her baby tested positive for swine flu....and she had the same symptoms as Mateo. So I figured I better be "safe rather than sorry" and I took him in to see his doctor the next day. Of course, Mateo tested positive for H1N1. His fever was already gone but I could tell he didn't feel very well. I went to 3 different pharmacies looking for Tamiflu before I finally found one that hadn't run out. Anyway, Mateo was back "up and running" within 24 hours. It wasn't the life or death situation that the public is being warned about. I realize that for some people, it has been....but I guess we were lucky.

Unsure of the future

We have recieved orders from the military (my husband serves in the Air Force) to move by the end of this year to Clovis, New Mexico. I looked it up and that AFB is in the middle of nowhere. My husband called and found out that they don't have a medical facility there that can support Mateo's medical needs, so this is all very bad news. Last year, we were given orders (that we actually wanted!) but had to have them cancelled due to Mateo's fragile condition at the time. Now we need to have these cancelled due to it not being a place that has a children's hospital. my husband is putting in a lot of time trying to get the necessary paperwork done. Mateo's doctors have all been more than accommodating in getting the letters, statements and signatures that we need. We met with the medical board on base last week to discuss all of this. But they don't have the authority to make any decisions, so we are still waiting. If we had to go, we have less than 2 months to sell our house and find Mateo a cardiologist.

We feel it would be in Mateo's best interest to just stay here in Tampa until after his next surgery. His doctor said it would most likely be sometime next summer since they don't like to operate in the winter if its not truely needed. I would really hate to move right now and try to find all new doctors and surgeons before next summer. Finding someone you trust with your son's life is not an easy task. In fact, the closest facility that could take Mateo is almost 2 hours away! I feel that things will work out though. Everyone on the base have been very helpful in getting us what we need and I am just praying that all the paperwork goes thorough without any serious issues!

Progression

This summer has been so busy! We have had a lot of fun being with friends all summer long. Mateo is almost a year and a half already....just a month left before he reaches that mid-year mark! I can hardly believe it. He is growing so fast and learning so many new things. He has been practicing his walking all summer, and he has gotten good :) He is practically running now. I had to go up a size in diapers too....and we were able to turn his carseat around so now he faces forward. The day he first got to ride around forward-facing, you could tell he was excited. He looked like he felt so special and proud of himself. I loved watching him (Mel was driving).

Mateo spent a lot of time this summer swimming in our friend's pool. He loves to float around in his "crab floatie" and kick his legs. He gets excited when all the kids start splashing around. And the other kids are so good with Mateo! They include him in on the fun and are very gentle with him. It makes me not feel like I have to worry so much.

We had a few visitors this summer too. My best friend came for a week and gushed over Mateo and his cuteness LOL Mateo loved her and had a lot of fun playing with her.
In August, we flew up to Wisconsin to see my family. It was Mateo's first plane ride and he did excellent. No problems. I was worried about needing Oxygen, but he never even turned dusky. He slept through 1/2 the flight and never even shed a tear during descent...so I guess his ears never bothered him.

In Wisconsin, he got to meet his Uncle Jake and Aunt Amber and Cousin Dawson for the first time. Mateo had laid claim to Grandpa within hours of being there. In fact, he didn't like my dad holding Dawson (4 1/2 mos at the time) either. He whacked Dawson over the head with a toy while my dad was hold him. It sure was funny....but naughty LOL

Mateo LOVED being able to run around outside. The weather was a little cool, but nothing a light jacket didn't fix. My parents have a large yard and Mateo ran around in the field and the front lawn. He absolutely loved my parent's animals.....the dog and cat. He couldn't get enough of them. We got some great pictures.

Florida has been so hot and humid this summer, its been hard to get out of the house to do anything. The park is off limits because of the heat. Now that school has started back up, most of our pals are either working or in school, so I think Mateo has gotten a little bored. But we are starting back up at the library weekly for story time and I try to get a few projects in here and there for him. His attention span is so short, its hard to continuously keep him occupied!

But Mateo is doing well. We couldn't be happier right now and his health seems to be as good as can be for now. Doctors are thinking his next surgery will be scheduled for sometime next summer. Too soon if you ask me!

Test Results

On June 26th, Mateo had a sedated ECHO and a 24-hour holter monitor performed. ECHO is short for Echocardiogram. Its an ultrasound movie of the inside of the heart. It can detect nearly any problem with the functioning of the heart muscle. Mateo has these done regularly at his cardiac appointments. However, he is usually so wiggly, that the technician has a hard time being able to take the time needed to check every part of the heart that the cardiologist needs. So that is why they scheduled a sedated ECHO.

We went in around 8 am that Friday to get started. They gave Mateo a little Valium orally and within 20 minutes, he was sound asleep. He definitely fought to stay awake, but eventually had to give in. The technician came in and took about 45 minutes to get all the pictures that she needed. Its very interesting to be able to see the inside of your own child's heart like that. It looks like an ultrasound that an expectant mother would have, so without the tech pointing everything out, I most definitely wouldn't have known what I was looking at!

Mateo came out of his deep sleep after about an hour and then we took him over to the cardiologist's office to get fitted for his holter monitor. A Holter monitor records every beat of Mateo's heart for 24 hours. Its usually used to make sure that a child isn't having dangerous heart rhythms that need more attention.

Mateo had a bunch of little stickers put onto his chest and abdomen, and then lead wires came off those stickers and attached to a little recorder that looked like a cassette tape player. He actually did really well with it. He didn't pull at the wires and he slept through the night with no problems. I thought it might irritate him because it was a little bulky, but he surprised me. Within that 24 hour window, I had to record what he was doing...whether it was sleeping, crying, eating or playing....so that if there was a change in his heart rhythms, the doctor would know if it was caused by something he was doing or if there was really a problem.

I got the results from those tests earlier this week. It was all good news. Mateo's cardiologist said that everything looked great. He had normal heart function (as normal as a boy with 1/2 a heart could be!). There was no tricuspid regurgitation and no aortic regurgitation. (Sometimes, the valves that control the direction that the blood flows through the heart don't work properly and because of that, some of the blood that should be moving forward, flows back the wrong way...in that case, when its serious enough, those patients end up needing surgeries to replace those valves). She also said his arch looked really good....it wasn't narrowing. Results from the Holter monitor were also good. She said his rhythms were completely normal. That report from the doctor was a huge relief and Mel and I feel so much better about Mateo's heart issues right now. His doctor even made his next scheduled appointment 6 months away instead of 4! To me, that says "things are great, nothing to worry about, see you in 6 months". LOL

We were also given the "okay" to fly to Wisconsin in August. I was a little worried about Mateo flying, but his doctor says he will be fine. So that's the plan! We are excited and looking forward to this trip.