Monday, November 28, 2016

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!

Tuesday, April 5, 2016

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.

Wednesday, February 24, 2016

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

Friday, January 8, 2016

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.

Cardiology Visit

Shane's cardiology update.

We got some great news today. The doctor said everything looks Perfect. Meaning everything looks as perfect as it can for Shane. No significant valve leak difference from last year. His valve is still leaking mildly. He is looking stable and his aorta is still wide open and his heart muscles are pumping well. We go back again in one year, but our Doctor mentioned if that one looked good we might start to go to several year check ups! Unheard of! I just can't believe it! The doctor was very happy and just said we will just keep an eye on him.:) I just feel so blessed and grateful. It's always so worrisome sitting through the echos then the EKG , then waiting to hear from Doctor all the results! We are tired it's been a long night and day. Time to take a nap.

Tuesday, December 1, 2015

First Night of Cpap

My little elephant survived his first night of CPap last night. He was not happy at first and did fight us, but like the trooper he is,he fell asleep and kept it on. Now just to get Jeremy from not waking up so early then waking Shane

Tuesday, November 24, 2015

2nd Sleep study

  November 3rd at 8pm we arrived at Primary Childrens Hospital for our 2nd sleep study. Just a little over a year after the 1st one. Shane did really well while the techs were putting all the equipment on until the canula got put on.

He cried kept saying "I want it off!". Nathan and I tried to calm him down. We sang songs like we always do before bed. He basically cried himself to sleep that night.:( he woke up several times during the night and said he wanted it off again. They wake you up early around 
5:30 am and then you are out of there. 

After two weeks we went to Primary's again for the follow up appt to see the results of the sleep study.

After 2 hours at the appt we got our answers. 
  So based on the sleep study he has mild obstruction apnea like he did before. Good news is before tonsil/adenoids removal Shane was not breathing or a having obstruction breathing about 9 times an hour, now he is only doing this about two times an hour. So we definitely have seen improvements. His sats  drop to around 86 every time this happen. His current diagnosis though more mild than before, we worry especially with his sats dropping we don't want to stress out his heart more than it needs too already. The doctor suggested we do a cpap machine try it out for 4-6 weeks and then do another sleep study with it on to see if it's helping or adjust settings as necessary. We don't like this diagnosis, but our wonderful brave Shane just put on the mask for a fitting with no complaints at all,and the nurse says this is the first she seen with a kid not complaining about it. 

We also might have to adjust their sleeping arrangements since Shane is on top bunk.:) if this mask causes more harm to him not getting sleep needed than we will go from there or use oxygen. This journey of Shanes is hard to take sometimes, but we know these things help Shane have a better life and that's worth everything to us and we have been through so much worse. We will see cardiology and have another sleep study in January/February.