Sunday, October 30, 2011

It's been a really long time!

I can not believe it has been over a year since I last updated this blog. I suppose now with Facebook, I keep everyone updated there now. It has been a very fast and wonderful year for sure filled with so much I am not sure where to start.
I guess I will start with Megan, she is amazing! She turned 8 years old in June and is now in the 3rd grade. It still amazes me how quickly she has grown up. She is a straight A student, at the end of second grade she was reading at a 5th grade level and this year she is just doing amazing in school. She does dance twice a week, ballet and jazz, which she loves. She is also continuing on with Brownies, which I am a leader of her troop. She is just an amazing young lady who is growing up so incredibly fast.
Mike & I are doing well. Mike graduated back in December 2010 with his MBA from NC State. We were so happy for him to be done with that, of course work picked up quite a bit...so all that extra time at home I thought he would have was gone! But no complaining here, we are very thankful that Mike has a wonderful job that he enjoys and provides us so much. We actually did quite a bit of traveling this year. We took a few days away just the two of us to Key West, FL in March 2011 and although it was a disaster getting there (long story), the days we were there were wonderful! We then made it up to Buffalo in May for my very good friends wedding. It was so wonderful to spend time with my friends and see two beautiful people get married, but the weekend went by way too fast! In July we were able to go to Las Vegas with Mike's work conference and it was fantastic!!!! A fabulous adult week away with the kids at home with my parents!!! It was amazing!!!
Just a few weeks ago we took a fabulous family vacation to Disney World. We stayed at the Polynesian Resort right in Magic Kingdom and it was beyond fantastic!!!! We all had such a great time. The kids did amazing and made memories to last a lifetime for sure! I have included some pictures below!
Now as for Mr. Michael! Well, can I just say, the kid can eat!!! Yes, I said it and I finally mean it!! After spending 5 difficult years trying to get this kid to eat and be willing to try new things, everything has just come together and he actually likes to eat!!!! We started feeding therapy again this summer with our favorite speech therapist Laura, and she has been amazing. He had a lot of week muscle tone in his mouth and just did not chew efficiently. It took him almost 3 times as long to chew up a piece of food as it does you or I, so he would get tired or bored easily and not want to eat...well, after lots of therapy, he is doing amazing! He is actually up to about 37 lbs now, which for a kid who hated to eat for all these years and was only 4 lbs at birth, I say that is pretty amazing! We also restarted his prevacid for reflux, so that has made a big difference as well. Just over all Michael is doing amazing! His speech has come so far, it is just amazing!
Michael was in the pre-k class at the elementary school last year, and although he could of started kindergarten this year, we decided to hold him back a year. Just give him that extra time to catch up and really be able to succeed in school. Thankfully, we were able to get him a spot in the pre-k program again this year at the elementary school and he is doing fantastic! He is really matured and come out of his shell and the teachers are just blown away by how much he has improved since last year. It makes me feel so good knowing I made the right decision for him. All he needed was more time, and that is exactly what we gave him! Now he talks non stop sometimes and eats all the time, who is this kid and what happened to Michael? LOL!!!
On to the medical front. He sees his urologist once a year and at the last visit in April everything looked fantastic! His kidney is beautiful (he only has one) and functioning perfectly!!! We will continue to go to the urologist once a year just to make sure everything continues on the same road just to be safe. He also sees the Orthopedic doctor once a year to check his scoliosis, and everything is stable, even with these growth spurts he has had over the past couple years, so that is wonderful news! He sees his GI doctor every six months, and we go next month. They just want to monitor his growth and see how the reflux is doing.

Now on to the serious front with his cardiologist. Now lets remember that Michael had 2 open heart surgeries and 3 cardiac catheterizations before he was 1 years old....that was 4 years ago already. We go to the cardiologist every 6 months and are so used to hearing the same story after Michael gets his echo done, "everything looks great, see you in 6 months"....well, that wasn't the case in July at our last visit. When Dr Milazzo pulls out the markers and starts to draw diagrams to explain things to you, its never a good sign. Essentially, Michael is growing so great, that his pulmonary artery can't keep up with his growth. It's a double edge sword, you want him to grow, but he is growing so much that his artery cant keep up. So right now he is getting too much blood flow into his right lung, which over time will cause damage to Michael's lungs and we want to avoid that. So Michael has to head back to the cath lab in the coming months to open up that artery, either by angioplasty or placing a stent in there. We go back on December 2nd and will find out more then. We knew that these were the issues we were going to face with Michael, but it still isn't easy hearing it.
So please keep Michael in your prayers for continued growth, health and healing and for his upcoming cath. I will try to update this more often!







Wednesday, August 18, 2010

Happy 4th Birthday Michael!!!

I know I am a little late here, we were at the beach with not much access to the internet.
I can't believe that 4 years ago, on August 8, 2006 at 2:42 am this amazing little miracle entered our lives. He was so small, only 4 lbs 5 oz, 17 1/2" long, and so incredibly sick and fragile. No one knew the extremely difficult road ahead of us with Michael, but somehow, with the support of amazing parents, family and friends, we have come so far and Michael is doing amazing! To date, Michael has been hospitalized a total of 10 times. He has undergone 2 open heart surgeries, ECMO (heart/lung bypass machine) for 5 days after his first open heart surgery, 3 cardiac catheterizations, 4 other major surgeries along with being hospitalized for pneumonia for 8 days, turning blue at home when he was only 5 months old, and stomach bug dehydration issues, and then add on the countless tests, blood draws, MRI's, x-rays, etc., it is really amazing all that this little boy has been through in his life. Yet he is still the happiest, sweetest most amazing little boy I have ever met!
It's amazing when I look back at these pictures...I am reminded just how close we came to losing him on more than one occassion and I can't even begin to explain to you what that does to a mother.
Watching my little boy fight so hard is truly heartbreaking.
And yet, despite all of that, here he is today! An amazing, healthy and happy little boy who I adore and am so incredibly and deeply thankful for.

We celebrated Michael's birthday at the beach again this year! It was really a great time! He is a true fish and LOVES the water. We did so much at the beach this year and the kids really had a blast...it was nice to get home!!!
We took the kids fishing and actually caught one small fish that the pelicans ate!


Michael loved his chocolate birthday cake! The kids helped me make it and Michael picked it out!



We even went on jet ski's and the kids loved it!



Michael went for his 4 year physical today and did great. He now weighs in at 31 lbs and is 38 1/2" tall. It's the 10th% for both. Michael has stayed on the same growth curve now for the past year which is great. The fact that he has grown 3 inches and gained 2 1/2 lbs is exactly what the average 4 year old has gained this past year. So YEAH for Michael growing! It's just that the average 4 year old boy is 40" tall (I forget the weight he said), so Michael will probably always just be on the small side, which is fine with me! I would rather him be too small rather than worrying about him being too big which comes with its own risks and complications to life even for "normal" kids!
Michael is starting all day pre-k on Sept 1st and we are so excited! He will be receiving speech therapy 3 x a week while in school and hopefully occupational therapy 1 x a week. He is going to be fully evaluated once school starts and they will actually even do an IQ test on him which I thought was very interesting. He is certainly a very smart kid, just behind on his expressive communication skills. I love the fact that he knows all of his letters, counts to 20 and knows all of his numbers 1-10, all his colors and basic shapes...he loves to color and cut with scissors, all the things that typical 4 year olds do. He loves to write his name with chalk on the chalkboard too! I should of given him a shorter name though, Michael is a long name to learn to write! :)


Thursday, July 29, 2010

Cardiology Update!




WOO HOOO!!!!!! Our appointment this morning with Dr. Milazzo went fantastic! Michael is currently 38.6" tall and weighs 30 lbs 2 oz. WOO HOO!!! His blood pressure was wonderful and everything looked great! Dr. Milazzo examined him and said he looks and sounds fantastic! We had to get an echo and EKG done while we were there. Michael was a perfect little boy while the echo was being done, they put in a Dora video so of course Michael was happy! His echo looked fantastic! The conduit is wide open, his pulmonary arteries are wide open, it doesn't get better than that!!!! WOO HOO! Dr. Milazzo said that based on his echo, he expects Michael to get AT LEAST another 3-4 years out of his conduit minimum. We will continue to go every 6 months to see Dr. Milazzo because Michael had such an incredibly rough start to life and they are a little more cautious with him, but overall, he is doing extremely well and Dr. Milazzo couldn't be happier!!!


Talk about a huge sigh of relief! Michael is just an incredible little miracle who continues to surprise, amaze and take my breath away every day. I am so incredibly lucky to have this little boy in my life!




Saturday, July 24, 2010

Almost August already.....

This summer is literally flying by! I can not believe that in two weeks from tomorrow, my little boy will be 4 years old! How in the world did that happen? So much has happend and changed in 4 years, it seems like an eternity ago that he was born, yet he is still my little baby and I can't believe he is this big boy now. Crazy!

This summer has been flying by literally. Megan has been busy with her summer camps and playing with her friends. She has become quite the expert little swimmer and she loves going to the pool! It is so great to finally see her become so confident with swimming and not be afraid of the water. We go to the neighborhood pool quite often, especially since it has been so hot! Megan starts school in 5 short weeks and she can't wait to get back! I have a 2nd grader now! Makes me feel old! Megan really loves school and does so well that it makes it very easy! She had her 7 year physical a few weeks ago and she is up to 47.1 inches tall and 48 lbs, perfectly healthy and wonderful!!! She goes to get her eyes examined in a couple of weeks and we will see if she needs a new prescription for her glasses.

Michael is still getting speech therapy two days a week along with occupational therapy one day a week. I am so very thankful that we are able to get him the services that he needs. He is such a smart little boy and it is amazing how quickly he has caught up on so many things! I have to say that he is completely potty trained and has been accident free for quite some time now! He wakes up dry every morning and does so well all day long! It certainly took a lot longer with him than it did with Megan, but success has been met!!! He is a very active and happy little boy, even though he drives me insane at times, but that is what boys do right! :) Michael has his 4 year physical coming up in a couple of weeks and this coming Thursday we have his 6 month check up with the cardiologist...please keep Michael in your prayers for a very healthy report on Thursday!

We have been trying to stay busy this summer by hitting the pool and some day camps, but it has been kind of nice to just relax a bit. Mike & I spent a week in Vegas at the end of June and had just an amazing time! It was a total escape from reality and so incredibly nice!!! I can't wait to do it again next year! :) Mike is gearing up for his last semester at school and will finally graduate with his MBA in December! Can you tell I am excited! It has been a long two years, but so worth it!!!! We are going to have a nice graduation party for him!!!

Here are some recent pictures, enjoy!

This picture is at Marbles Museum, Michael loved it!
Here is the fish he caught!
Michael and all the girls!!!

Michael, Megan, Daddy & Grandpa playing golf!
Grandpa giving some advice! Megan giving some advice back to Grandpa!
3 generations!


Daddy helping Michael out - have to start them out young!
Look at that swing!

4th of July fireworks!
Michael's new favorite food is corn on the cob!
Michael's new swimmies!
Megan's pool party!
Happy birthday sweet girl!

Thursday, June 17, 2010

Megan's Birthday & HUGE RELIEF

Yesterday was Megan's 7th birthday! Can you believe it? I certainly can not! Megan is truly the most amazing little girl I have ever met! We celebrated by having a great dinner together as a family and some cake and Megan got a new bedding set for her birthday. She is having a birthday party at the pool on Saturday with some of her friends, I will be sure to post pictures later!

Things have been very busy for us here! Megan is participating in Girl Scout Day Camp this week. It goes from 9 - 3:30 everyday and she is really having a blast! She comes home with so many crafts and activities that they did during the day and she is meeting a lot of new friends. Next week it is on to golf camp at NC State for 1/2 a day, lets just say daddy is really looking forward to her doing that one! Megan has also started to take a golf class once a week at The Preserve at Jordan Lake golf course. The class is taught by real LPGA teachers and she is getting a set of LPGA golf clubs as well (that was her other gift!). This class will continue until October. She is officially done with 1st grade and is my rising 2nd grader now! She is really just amazing! We go for her 7 year physical next week!

Now, for the HUGE RELIEF part of my post...back in April Michael had his 1 year follow up visit with the urologist...I didn't post about this because I was a bit upset and didn't want to talk about it...well, during that ultrasound, there was a strange mass that showed up on his bladder, something that hadn't been noted before. So the doctor wanted us to come back in 2 months to repeat the u/s and see if it was still there. If it was, this would not be good...it could mean a tumor in his bladder. If it was still there, Michael would have to be taken to the OR and scoped and biopsy this mass to find out what it was. I have tried really hard to not think about this for the past two months (it has not been easy). Well, this morning we went back to the urologist, thankfully Mike came with me. During the u/s, Michael had drank a big glass of water, well, it made his bladder nice and full and easy to see, yes, see the mass that was still there and unfortunatley, it measured a little bit bigger than it did in April...so needless to say I was not very happy. We went next door to see the doctor and after waiting what seemed like forever, we finally got to see the doctor......he was all smiles! He said that the area in Michael's bladder was all fluid filled, not a solid mass...if it had been a solid mass it would be a tumor, but a fluid filled mass indicates that Michael has a ureterocele....what that means essentially is that there was a blockage in Michael's right ureter which caused the ureterocele and most likely caused the damage to his right kidney so it could not form properly, which is why Michael does not have a right kidney. During the u/s it showed that the cysts that were there for his right kidney are no longer there, it is just empty fluid filled space (strange right!). Anyway, the doctor looked back at all Michael's old films, including the CT scans, VCUG's , etc., and he says that this has always been there, it is just much easier to see when Michael's bladder is full. We don't have to see the urologist until next year, they will continue to monitor this area, but it is nothing we need to worry about at all...of course if Michael had a right kidney, this would be cause for concern and Michael would need a procedure to correct this, but since he doesn't have a right kidney anyway, we don't have to do anything! YEAH!!!!

So now that I am feeling so much better!!!! On to the next issue that comes up right! :) Our kids certainly like to keep us on our toes! Michael is taking a nap now and I am going to lay down myself, I am exhausted!!!!

Tuesday, June 1, 2010

Ortho Update

Michael had hsi 9 month Orthopedic appointment this morning...I can't believe it's been 9 months since we have been there! It was a great appointment. Michael measured in just under 38", he didn't want to hold still, so we didn't get a very accurate measurement...but he did weigh in at 30 lbs again...so he is growing though! We had his x-rays done and got in to see the doctor right away. As we had prayed for, everything is stable. His scoliosis curve is stable and has not changed much at all in the two plus years we have been coming to see Dr Fitch, so he is comfortable in letting us come once a year now. Also, his leg length discrepancy is still stable...that right leg is about 1/2" shorter than his left leg (which we think was damaged during his first cardiac cath when they tore his femoral artery and he almost lost his leg) so if that continues to grow like that, he eventually wont need but a small lift in his shoes and it shouldnt cause him any problems! But again, these things are just issues that have to be monitored and pray that they dont change, or if they do change, they change for the better! So we wont see Ortho again until June 2011!! WOO HOO for good news!

Thursday, May 27, 2010

4 years ago this month....

Our lives changed more than I could ever begin to imagine....we found out 4 years ago, this Thursday before Memorial Day weekend that the precious little baby boy that I was carrying had a life threatening complex congenital heart defect. From that day on, our lives would never ever be the same. All the things that you normally worry about when pregnant went out the window and life was filled with doctors appointments, tours of the PICU at Duke Hospital, cardiologist fetal echos, meeting with the heart surgeon who explained to us that our baby would require open heart surgery shortly after birth and spend about 3 weeks in the hospital, but that he had a good chance of survival.........good chance of survival.....good chance of survival. Four little words that we clung to for dear life. Our little boy has done more than survive...he has truly defied the odds that were so dramatically stacked against him! How in the world did we ever survive those months, those weeks, those days, those minutes. Crazy when I sit here and think back over all the things we have been through with Michael, 5 weeks premature, 2 open heart surgeries, ECMO for 5 days, 3 cardiac catheterizations, 4 other major surgeries, a total of 10 hospitalizations all in his first 2 years of life...my God, how does anyone survive that, let alone thrive!!! And that is exactly what Michael is doing, he is thriving! He is an amazing, wonderful (most of the time! hehe!) smart, wonderful little boy! He is truly a miracle and I thank God for him every day and am so truly grateful for all he has taught me. Life is truly a gift, I know a lot of people say that and think that they know what it means, but truly, each and every single day is such an incredible gift and I am very lucky to have such an amazing family surrounding me!