Getting closer to Valve replacement

 Here we Go.......Cardiology check up.

Shane Heart Update.....

-Shane’s heart continue to remain stable. His heart is about the same as his last MRI last year.

What this means? This means... his valve is still moderately severe leaking, but it’s holding strong and growing with Shane.

-Next steps.... Doctor wants Shane to wear a Halter monitor for a few days to see how his heart rhythm is doing generally.

-We will also be getting a stress test done to see how Shane’s heart is doing when he is active. Since he has had a few scary “heart episodes” while being active.

-We also talked surgery today, there may be hope that he can get the valve replacement through the cath lab vs open heart surgery this would be fantasitic! As it is less invasive. Although the surgeons may look at Shane’s case and see if they want to help fix the valve that is broken and use his own tissue.... lots of things to consider and only around 30 kids at Primarys who have had valve replacements through Cath so it’s fairly new.

-Surgery could be in a few years or next year. We don’t know. We once again don’t want Shane’s heart to dialate and stretch further than it won’t come back. So the doctor may get want his valve replaced sooner than later. Shane’s continues growth is also an “issue” the bigger he is the better but how his heart will keep up with that we don’t know.

We will do these 2 tests soon. Get the results and the once again consult with doctor. Otherwise we will probably just continue follow closely and see doctor every 6 m.

First Day of Kindergarten

  Can it be? Is this day really here? So many emotions. So many times I have thought about this day. I had always have seen my other friends posts about their kids first day of kindergarten and said oh that isn't going to be such a big deal! I'm not going to cry. Then here I am and I have tears,worries, and crazy give me my son back woes! He can't be old enough to go to school. We have gone to preschool every year since he was 3 so why is this so different?

  Will they know his heart literally and physically? Will they know what to do if something happens? Will they be able to be patient with him when he lacks the words to explain himself sometimes? Oh and dont forget the germs! I guess you just have to have faith and hold on for your dear life. Hope everything goes well!

Cardiology Appointment

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ust got done with Shane's heart appt. His heart is about the same has last year nothing is getting worse, but his heart valve still leaks and is slightly narrow. His left ventricle side is still large and his aorta is still wide open. So all good things. We asked dr about sports he said no high contact sports No football,But he could do soccer, swimming, basketball, soccer that type of thing. He also said if it was competitive he would do a stress heart test as he gets older. He definitely said his valve would need replacing later on in life but of course the longer that is the better. So good report! We go back next year.

Our Fourth and Hopefully Final Sleep Study!

Here we go again.... sleep study number 4, without cpap. I'm so sad I can't be there since I have baby now,but daddy is taking good care of him. Hopefully the results are good and we can get rid of cpap. He has such a hard time wearing it and keeping it on. Not to mention all the bloody noses he gets from it. Price to pay though for your child so he can breathe safely at night.

They never give you results right after the sleep study so after a few week we went to his pulmonologist to receive the results.
 We are sleep Apnea free!!!!!!!! His sats stayed in 90s and no heart irregularities ! NO MORE CPAP!!!!!!! We are soooooo happy! We are down to one specialist now for Shane!!! Just his heart doctor! It only took 5 years!

New Baby Coming

  We are so excited to announce that our third child will be arriving sometime at the beginning of November. We are so excited for this baby. Although my body disagrees with this pregnancy. We are so Happy that Shane will get to be a big brother again and hope this baby is healthy.

Graduating from Special ed Preschool ... but speech continues

  Lots of emotions today and Yes they are about Shane go figure!😁I met today with the therapists and Shane's teachers to discuss all the testing he has done and possibly change to his IEP. I walked into the meeting thinking they were going to take off his development delay diagnosis and leave his speech delay and go to shorter preschool week. Well they said that Shane is scoring average in almost all his areas! This is great news it is! 😁It's just very hard to take! He still is around 39% in his speech so a little below average,,but doing well enough that he doesn't need an IEP anymore! So that means he no longer qualify for the special Ed part of government funding.... Yes great news! So why do I feel so emotional? Why did I break out and sob at the end of meeting with all the therapists and Shanes teachers watching? Shane can still get 20 mins a week if I want at the school with speech therapy. He is still welcome to go to preschool,but two days a week and we would have to pay. So I think the emotions come from it all happening at once one minute he is in preschool next min we are told these options. It's a lot to handle especially being his mom and his speech to you still needs work. Plus finding the money to pay for preschool. Oh dear . I'm grateful he is doing so well, and I know later on if he struggles in school he can get help again. My security blanket is ripped away from me

3rd Sleep Study

Shane was such a trooper like always this time around. He was so tired that he fell asleep while they were still putting the wires and cpap on him. I guess 3rd Times a charm. Man this kid melts my heart. I had lots of anxiety and fears for sleep study then cardio within 24 hours! Kind of crazy I know to do that but when the hospital is far away you try to save yourself some time in between. 

Good morning everyone!now for a yummy breakfast and our not so favorite heart appt at 9:45am.