Thursday, January 21, 2016

Evan's latest checkup!

Hello everyone!  I forgot to make an update after our last appointment!

We headed back to Texas Children's a few months ago for a routine EKG.  It had been 2 years since his last check up! Dr. Seary was very pleased with Evan's heart.  Everything looked completely normal on his EKG.  He was such a brave boy and sat still for his EKG, I was so proud of him!

He will not need to have his heart checked for 5 years.  At that time they will do another Echocardiogram.

The Dr. was a little concerned with his size and decided to run some labs to make sure it wasn't anything with her heart making him so small.  He is a horrible eater and I expressed my concerns about his diet to the Dr. also.

We went ahead and had the labs drawn there.  Evan was not so happy about that part of the visit!

A few days later Dr. Seary called me back about the lab results. Everything looked good except Evan is a little anemic.  He sent the lab work to his regular pedi and said to follow up with him.  Evan will need to take an iron supplement.  We also had his pedi run tests for Celiac disease since he had some symptoms and that can also cause anemia.  Those labs came back negative as well.  We are guessing his anemia is caused by his poor diet.  The kid eats no meet or veggies! So frustrating!  He lives on dairy, very few fruits and snack foods.

Well, that's about all of the updates I have for now!  Thanks so much for your continues prayers and support.  Our little dude has been through so much and we are so grateful for all of your love!

Wednesday, January 22, 2014

Last 2 appointments

Evan has been doing great!!!!  He is walking/running everywhere, getting into everything, climbing, babbling, and being very clumsy!  ha ha.  He is getting way too big too fast.

We went to Texas Children's in November to see his Cardiologist and have another Echocardiogram and EKG.  The Echo and EKG both came back normal!  He has no lasting issues from his battle with Kawasaki Disease.  We are so thankful!  I couldn't have been more relieved to receive that news!  We do not need to go back to see the Cardiologist for 2 years, so Evan will be 3 years old.  Crazy!

He did say that when he is older and able to run on a treadmill that he would recommend doing a stress test.  Since Kawasaki Disease is still very poorly understood; especially long term, he would recommend doing this just to be safe.  He will also need to be monitored closely as far as his cholesterol and diet to help prevent any issues that could arise.

Earlier this month we headed back to Texas Children's again, this time to see the Rheumatologist.  She was very pleased with the results of his Echo and he was given the all clear to go ahead and continue his vaccinations.  He was not able to have any live vaccines after the treatment for Kawasaki, which is IVIG, because the IVIG would basically fight against the vaccines and push them out of his body and they would be useless.  I am very nervous to start up his vaccines again, being that he started running fever the day after his shots and was diagnosed a few days after.  I am hoping to go slow with them and not do too many at once to see how he will respond.  His doctors assured me that the vaccines did not cause him to become sick, but with it being so poorly understood I can't help but be cautious.

We will not have to see the Rheumatologist again unless there are anymore issues.  (which we are not anticipating :) )  She said the likelihood of a child having Kawasaki Disease twice is about 2-5%.  I'm sure any time he runs fever for the rest of his life I will be worried.

Thanks for reading and please read up on Kawasaki Disease!  You never know who you could help by knowing the signs to look for!

January 26th is Kawasaki Disease Awareness Day!

Thanks for reading!!!!


Tuesday, August 6, 2013

He's a mover and a shaker!

It's hard to believe that our little "Super Trooper" Evan is already almost 10 months old!  This year has flown by!  Time needs to slow down.  We are trying to enjoy every minute of him being so little.

We received good new on Evan's lab results after his last checkup back in April.  We have thankfully been able to discontinue the Aspirin.  He has not has to take any more medications!  We do not have to go back to Texas Children's until January of 2014 to see his Rheumatologist!

We have had a very busy and exciting summer.  It has been crazy being home with 3 kids all day every day!  They are keeping me busy for sure!  We started the summer with a family vacation with my sister Andrea and her family to Gulf Shores Alabama.  Evan's first trip to the beach!  He was not very fond of the waves but he enjoyed the pool!   Colten and Liliana had a great time also!  They always love our annual trip to the beach.

Colten attended a Cub Scout day camp the week after we got back from Gulf Shores.  He really enjoyed himself.  They get to practice archery and shoot BB Guns.  He loved it!

Liliana attended Summer Workshop at her dance school.  She loves to do this every summer.  She really enjoys learning some hip hop moves and spending time with her friends!

Just this past week, Eddie's parents and our 2 nephews came to visit from Monahans.  They traveled 12 hours to come visit!  We had a great time.  The kids played well together and Grandma and Grandpa were able to spend some quality time with them.  Evan warmed up to them quickly and was showing off for them in no time!

He has grown so much this summer.  He started to pull up while were in Gulf Shores and there has been no slowing him down since!  Now he is starting to cruise along the furniture.  I'm pretty sure he will be walking in the next month or two.  We are so blessed that he is doing so well!  He is seriously one of the happiest babies I have every met.  You would never guess that he was ever so sick.  His smile can light up a room.  His little personality is really starting to come out and let me tell you, he has a BIG personality!

Friday, April 19, 2013

Happy 1/2 Birthday Evan!

Our little man celebrated his 1/2 birthday on Monday!  We didn't really celebrate literally, but you get my drift.

He has had a few firsts this week:

1.  He is putting his knees up under his chest while on his tummy.  His head is on the ground though, it's pretty funny.  I'm sure crawling isn't far away.  yay
2.  We are working on sleeping without the pacifier.  I cannot get up 12 times a night and replace it anymore.  Mommy is TIRED.
3.  He is loving his baby food now :)  Today he tried carrot, apple and parsnip mixture and he ate the whole pouch!  Maybe this child will finally be a veggie lover?  I can hope!

Nothing has changed as far as his health goes.  Still taking baby aspirin and waiting on the lab results.  We had to go to a local lab on Monday because the blood they drew at Texas Children's on his last visit with the Rheumatologist.  They said it clotted in the tube.  He was very brave for his bloodwork and the technician got it on the first stick.  What a relief for us all.

Hopefully we will get good news on the bloodwork and he can discontinue the aspirin!

Thursday, April 11, 2013

Getting bigger and stronger everyday!

I received a call on Tuesday from the Rheumatologist at Texas Children's.  At our last visit with them, they drew blood for a CBC to check his platelets.  They had been high the last time they checked.  They had a lot of trouble getting blood and she said the blood was clotted in the tube so they could not get results.

She said we needed to go to a local lab and have the blood redrawn.  If everything looked good then we could stop the Aspirin.  I guess the Cardiologist and Rheumatologist did not communicate because his Cardiologist told us to stop the Aspirin last week!

Now we are back on Aspirin until we can get the results of the new bloodwork which we will have drawn on Friday!  She is concerned about his platelets count being elevated and having them stick together.  So back on baby Aspirin again!  Poor Evan is so sick of taking medicine!  

He has just started eating baby food in the last week.  He loves applesauce so far!  We tried bananas last week but he developed a small rash the next day, so we will try those again later.  Not sure if it was a fluke or due to the bananas.  Evan is a little piglet.  He screams at me in between bites.  "Faster mommy, I'm STARVING!"  I'm sure that's what he's thinking.  

I love how BIG he opens for the itty bitty spoon :)

Needless to say, Evan has become pretty spoiled during the last 6 weeks.  (As if he wasn't spoiled enough already.)  His favorite place to nap is mommy's arms.  While I love to hold him and snuggle him, I do have 2 other children to take care of and a house to run.  It can get pretty overwhelming when Eddie is on the boat working.  The last 3 days I have been working on getting him to nap in his baby bed.  He puts up a little bit of a fight for about 15 minutes but he does well after that.  This morning he napped for 2 hours!  (so did mommy).  

Night time is a different story.  He usually sleeps in his bed the first part of the night and then ends up in our bed for the other half.  GASP!  I know, horrible right?  Admit it, you brought your babies to your bed too when they were little ;)  I just don't have the heart to listen to him cry!   I know, I'm a sucker.  At least he's napping in his bed now.  Night time will get there eventually, right?  I sure hope so, this momma is worn out!

Tuesday, April 9, 2013

April 5, 2013 Another follow up Echocardiogram

Andrea and I took Evan for another Echocardiogram.  He had to be sedated again.  This time he did not want to go to sleep as easily!  He had taken a 20 minute power nap in the car on the way and didn't want to go to sleep for nurse Jenny!  After some struggling he finally went to sleep and they could start the echo.

Everything went smoothly and he woke up well from the sedation.  We had a few hours between the echo and they visit with the cardiologist so we walked across the street to have lunch.  It was Evan's first time to sit in his stroller without the infant carseat.  What a big boy!

We went back up to the waiting room after lunch and waited for the doctor.  Poor baby was so tired and fussy from the sedation!  He drank a big bottle and went back to sleep!

His cardiologist was quick and easy once he came in!  He said that his arteries were normal and that we could stop the prednisone now and also stop the baby aspirin!  We are able to start spreading out the time between the echocardiograms.  We won't need to return for 6 weeks for another echo!

We are so blessed and happy that he is getting better!  Thank you everyone for the thoughts and prayers!  We are so grateful for each and every one of you!!!

March 27, 2013 Rheumatology appointment

Today we had an appointment with the Rheumatologist at Texas Children's Hospital.  We had a great visit!  She was very pleased with is previous Echo and said that it was pretty much normal now!  We are going to wean him off of the prednisone now.  He was so happy and talked to the doctor the whole visit.  She was glad to see him feeling so good!

We are in awe at the power of prayer!!!!  It is truly a miracle that his arteries have gone down to almost normal size for his age!