First words / Ent appt

Hi all, Just wanted to let you all know that Shane has said his first word bubble!!!!! He has said things that sound like words before but never repeated them again. He repeated bubble several times today!!! I about cried! He has been in speech therapy 3 wks and I don't know if that was it or things are just finally happening. We have been down a long road trying to get here and we're thrilled!!!!  Shane also had his ENT appt yesterday and noticed his dysphagia was improving. The paralyzed vocal chord hasn't improved any so will probably remain where it is. Shane has always had congested sounding breathing and the doc said that's due too the vocal chord blocking his air way as it opens and shuts. He also said he will sound more congested when he is active and get winded tired out more easily than others. I thought that his heart would do that too. I guess he will need to stick to golf or something not so hard.. We go to his G.I again on the 30 th to figure out more his reflux problems. He is happy and healthy though so that's all that matters right now.  Love, Emily

Shane speech issues

I had an appointment this morning with Early intervention, a program through school district that helps kids in all different areas before they attend school. I have been concerned about Shane's speech so I got him evaluated today to see if he qualifies. They also evaluate where he is in motor,cognitive ,social /emotional , self help development. In motor/ self help development he is actually above his age ranking in at 21 m. In social/emotional and cognitive he is ranking around a 18 month old so a tiny bit behind since Shane is 19 m but not too bad. They were very pleased at how well off he was considering all he had been through. Speech however was a different story. In receptive language he ranks about a 13m old and in expressive language he ranks around a 7 m old. This was expected. I knew it was coming. Now a speech therapist will come to my house and give me the tools needed to help Shane grow in that area. Just thought you all would like to know.  Love, Emily and Nathan Sent from Yahoo! Mail on Android

New heart diagnosis

Hello All,

We took our journey to Primary Children's Yesterday for our every 6 month heart check for Shane. I was worried most about how Shane was going to do with a 45 min Echo with some strange man putting a weird device with gel on his chest that long. Luckily they let him sit up next to me for most of it while we distracted him with suckers, apps on my kindle and blowing bubbles. He did so well! He probably had about 3 or 4 suckers but anything to keep him from crying!  I laid with him for the other half of it and he also did well too. Luckily Grandma Cox was watching Jeremy so mom and dad could focus just on Shane and keeping him happy. These appointment can get long! our appt was at 2 and we got out at 4:30!:) After the Echo is done we meet with his heart doctor. She said the echo looked good and the left side of his heart looked a little larger ( she is thinking its due to the muscle that didn't pump his heart well earlier) She wasn't concerned by it and while listening to his heart she heard something she hadn't heard before. So Shane now has a BAV or Bicuspid Aortic valve defect. She also was not very concerned with it and is a very normal thing with babies with a pinched aorta what Shane had.  Overall Shane got a little weary when some doctors came in but stayed his happy self for the most part and snoozed on the way home in car:)  So all is well and we will see his heart doctor in another 6 months untill they feel comfortable doing every year. Now we just got to figure out his reflux stuff. Oh well he will be 19 months tomorrow and he brings such joy in our lives! 

Love,

Emily and Nathan

Upper GI procedure

Hate watching my baby suffer. Had our upper GI today where they x Ray Shane has he is drinking and watch it as it goes down stomach to intestine.So they lay Shane down and have to hold his arms and legs still as they watch the stuff go down. Since Shane is Shane the stomach wasn't releasing contents to the intestines like they wanted to so after about 20-30 mins of waiting as Shane is screaming we decide to put feeding tube down to intestine so it's faster well it wasn't that fast as the tube had a mind of its own while Shane is still screaming. We finally got the x Ray they wanted after about 5 mins total of radiation! Since the stomach didn't release its contents fast into intestine they are recommending he get his stomach muscles tested because it didn't do what a normal stomach would do. It's so hard to see him suffer and still got no answers to reflux!!!!

Family update

Hello all,

Seems like everyone was doing a little update so I figured I would join the club. First all we on Tuesday went to a funeral for Wyatt a nieces two month old baby on Nathan's side who was found not breathing had a dead colon and intestinal infection but ultimately was taken off life support for brain dead during the time not breathing. This has been a very sad event in the family. Please send prayers of comfort for their family. This niece was adopted by one of Nathan's brothers at the age of 16. Was baptized and sealed to them but later on rebeled ran away when she was18 got married and had a baby. So we are hoping this will help her faith. Jeremy is now a month old and only waking up one to two times a night. I'm still missing my sleep greattly but surviving. Having the two babies hasn't been as hard as I thought which is good and overall Jeremy is a pretty good baby,cries when tired or hungry like a baby should. Shane is 16 m now and is such a cute kid just soaking up everything and trying to do more things on own. He just cracks me up and loves to analyze Jeremy's toes eyes ext. We went to shanes ENT doc and when they scoped him they still saw acid coming up from stomach so we are going to see a GI specialist for that to see why still doing that. They also poked one of his walls in throat while scooping and their was no response. So they are thinking that's why he chokes on food a lot because when food goes down he doesn't feel the food. So we are going to go see feeding therapist for that to help him and see if he aspirates just a tiny bit they will prob do another swallow study too I bet. He also got a chest x Ray when we went too. I'm so ready for all this to be done.oh we are also seeing a PT because his head tilt came back. I know it's not life threatening but I just want to have a normal kid please! I don't think I left any thing out anything Nathan is still loving his job doing health savings accounts this job is actually less stressful. We love fidelity and are veryblessed. We are barely making it with me staying home but some how it works out. We also are blessing Jeremy on May 5 th.

Jeremy has arrived

   We are pleased to announce Our 2nd child Jeremy was born. He was born 2 week early,
at 4:19 am 6 lbs 7oz, 19 1/2 inches long! I started feeling contractions at about 7:30pm

 and went to the hospital at about 11pm and with one 1/2 push's Jeremy came out! we are all doing well so far!!!!! love to all we are very tired!:) We are excited for what raising two children will be like and Shane seems to just ignore him but when Jeremy cries he gets curious he comes up to touch his feet and hands. Its fun having a baby in the house again especially a healthy one. We did have a scare when the pediatrician said he had a "murmor" I demanded we get an echo. They did the echo and all came back great! We were relieved. Jeremy also decided to scare us and choke on his amiotic fluid often after he was born. There was a time where he stopped making noises and called nurses in as quick as we could. We learned some tricks to help and then went home a couple days later with no issues. 

Another HEART/ENT appointment.

We just had two very important appointments in the last week. On the 2nd we went to see Shane's cardiologist he got his usual echo and EKG done. I don't know why but I was really worried this appointment. I bet it was because almost a year to that day was his first heart surgery. Anyway the doctor said everything looked great and he had normal heart function. They we so amazed at how big he was  and of course how cute he is! So this was all great news!!!

Next we went to see a different ENT this ENT is a vocal surgery specialists that we were referred to because Shane's vocal paralysis was not improving. They did a normal scope to check his vocal chords and noticed still ,that stomach acid is irritating his larynx and throat. They gave us zantac  on top of his normal anti reflux meds and hope it improves. Otherwise we might have to see a GI specialists. As far as his paralyzed vocal chord goes, it healed in a position where shane's voice is loud enough that they will not have to do surgery at this time. He says that Shane's voice is still not in normal vocal range but fine. We are fine with that too!!!!  

Shane's cardiologist also recommended we get a fetal echo done at primary's so we will do that sometime soon. We are almost 28 weeks now still due April 4th and still debating the name Jeremy. We continue to feel blessed daily and hope that it is given to all of you too!