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.

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

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.

  

Sleep Study results, New Cpap Journey

  Ok here is Shane sleep study update... After 2 hours we are finally on our way back home...

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.

Happy Halloween

Hope everyone had a great Halloween! We trick or treated in my in laws neighborhood,their sub division consists of two streets. We scored some nice candy, even a tooth brush and a few large sized candy bars. 

  The boys were very happy and excited and preety much ran to every house. After about a corner and one side of the street. Shane started complaining that he was tired and wanted to stop. We tried encouraging him what we could and even offered to hold his candy bucket. He started melting down quickly as we were hitting houses, but making our way back to my in laws house. Shane hit a wall yet Jeremy kept going. I guess I should of thought to bring a stroller or wagon,but I figured they could handle two streets.

  I guess this is trick or treating with a heart baby.  We still had lots of fun though Shane would scream "trick or treat!" While Jeremy would yell "surprise!"  When people came to the door. Every day is an adventure with these two! In case you didn't guess we are Mr. And Mrs. Potatoe with our two adoptive kids ( aliens) from Toy story.:) 

2nd Sleep Study

Here we go again....Wish us luck tonight! Shane has his sleep study tonight. Hopefully we will get the answers we need so we can make the next step toward helping Shane,get the sleep he deserves. Also figure out the issue. We will all be tired tomorrow. He did preety well till they put the canula on him which was the very last thing. It took lots of singing to calm him down. He kept saying "take it off!" " take it off!". Poor guy... He finally fell asleep though.

I know its a simply sleep study,but nobody should have to endure all that this kid has already endured. What a sweet boy! 

Family update

Hello everyone,

 

   There have been many changes in the Cox household that I wanted everyone to stay in the loop with. Our first one, is one that most know,but we decided in June to move more south. We put our town home up for sale and with in a few days on the market we got an offer. We found a house in Clearfield and left our town home August 20th. It was very sad to leave an area, ward. That we had been in close to 8 years, plus leaving close friends and neighbors. 

 

  We moved into our home a cute 4 bed, 1 bath,2100 sq foot ,rambler. Has a great yard and lots of updating to do,but nothing that we had to do to move in. More cosmetic things that we will slowly do. It has a wonderful large finished family room/ play room downstairs that sold the house for us. 

 

  We are enjoying the whole hour more a day we get with Nathan and hope when his work schedule changes it will be even more time with him.

   Jeremy is 2 1/2yrs old now. He still manages to keep us on our toys with his bold and crazy two years old personality. Yet he is so goofy and sweet he melts our heart.

   Shane is 3 years old and will be 4 yrs in December. He is 45lbs and 44 inches tall he according to doctor has grown 3 inches in 2 1/2 months and 2 lbs. He just started his 2nd year of special Ed preschool at a local elementary school. His speech is progressing so much. He is starting to use 3-5 word sentences and getting better at expressing himself. He goes to preschool 4 days a week. M-Thursday for about 2 1/2 hours.  >

 Jeremy and Shane share a room now in our new home and are best friends. Every where we go people think they are twins. I feel like they are any ways!:) we will hopefully tackle the potty training for both soon.:)

  As far as Nathan and I go Nathan is still working for Fidelity investments in the annuity department. He just passed his Life insurance exam also as part of his new department requirements.
 I continue to create and maintain the Cox household. Taking care of my home and kids all day is not easy, but I wouldn't trade it for anything!