Ent/ Helmet visit

Today we made our journey once again to Primary’s for our check up with Shane ENT( ears nose throat doctor) we also visited his helmet doctor don’t know what they are called.

                At the ENT they put a scope down his nose to check vocal area / airways and well there had been no improvement in his left paralyzed vocal chord and his larynx was still red and swollen. The doctor is happy that he is not getting   Pneumonia or spitting up so the swollen larynx is kind of puzzling and obviously the acid reflux meds he is on are not working as well, although he needs to continue taking it. The doctor wanted to see more improvement after 7 months of healing from his open heart surgery. So in January will will see a different   surgical specialist that will decided if surgery is needed to repair his vocal  chord.  As I heard it they will connect a nerve from Tongue to vocal chord ?Of course we don’t want this and we will ask all the questions we want if it comes to that point but it’s hard to judge at that point a Year old what his voice/ speech outcome will be with surgery. Not to mention the after affects. We will cross that bridge when it comes and once again this is not life threatening so we can handle it!

                Next we went to go get Shane’s head checked out to see his helmet shaping progress. His head is making improvements but 4 more weeks or more is still needed before the helmet comes off. I’m really fine with that seeing as it does not bother him or me.

                Finally after our adventures in salt lake we ventured to my ob for those who didn’t know we are expecting our 2^nd child and we found out IT’S A BOY ! Nathan just grinned and smiled . I’m still in denial that we are having another baby but as I’m starting to show a little, it will  soon hit me.  I’ am  grateful though the lord decided to send another bundle our way and we hope he is healthier than Shane.

            So I guess now we need to pray for  Shane’s throat and vocal chords seeing as the lord has healed his heart well let’s have a throat /voice miracle too.I also attached some very current pictures of shane will helmet on and off.

Love,

Emily

A surprise Baby!

After all we went through and are still going through I would like to announce we are pregnant. This was not planned and I'm very much in denial but I"m pregant with another precious child.

Went to the ob today I'm just barely 7 weeks so my due date is 4/4/2013 . Sad that I'm not further along for sickness but good because Shane will be a couple weeks older now. I haven't been nearly as sick with Shane though but usually sickest in morning and could take naps all day long!:) I just pray every night that I will have strength to take care of Shane. So that's the news with us.

Love,
Emily
Ps. I heard the babies heart beat today and they will do a specialist at 24 weeks.

ENT and Helmet fitting

We took our journey once again to Primary's today and met once again with our Ent (ears,nose,throat) doctor to check up on Shane's Paralyzed left vocal chord and swollen larynx. He scoped Shane which he did not like and I don't blame him. He said that his left vocal chord is still not 100 % which shocked me because Shane is a TON louder than the kitten of a sound he used to make after his open heart. So this makes me wonder how loud would he be with all of his vocal chords non paralyzed! lol Our doctor said it may never come back but will keep checking up on him. As far as his reflux he will continue to take that medicine because our doctor still see the need and they will evaluate Shane in 3 months. Our Ent also mentioned once again about Shane's "floopy airway" because shane is a noisy breather, he used the analogy of opening and closing your index finger and middle finger together and Shane's airway only opens as if only his index finger opened and shut. If that makes sense. He says that as long as his sats are always good and dosen't turn blue than he should be fine with that. 

  After the Ent we went to go get Shane's head fitted for a helmet. They put shane on a laser machine to scan his head.We should get the helmet on the 30th of July and he will need to wear it 3 + months.  Its nice that our visits to Primary's are getting farther and farther apart. It will be nice to when its once a year!

Heart doctor appointment

Just got back from seeing shane's heart doctor. He was 18lbs 9 oz and 28inches long. They did an Echo and EKG all came back with normal heart function. The doctor said that his left ventricle that wasn't pumping well was pumping as normal as the other good ventricle. Our doctor said " YOu weren't on the transplant list right? because if you are we need to take you off!" lol I said no were weren't but close to it! Shane is now off his medicines and I continue to feel my Heavenly fathers glorious hand in blessing my little ones heart. I'm so blessed and grateful for his love for our little family! I know this has not come with out the many fasts and prayers of everyone! Thank you all!

shane scare

After a crazy scary day i have finally emerged from being up till 4am. Shane had a high fever yesterday and was puking his food took him to pediatrician and they said it could be several things his throat was sore  his inner  ears were red and on his x ray showed slight fluid in lungs. So to be safe they wanted us to go get blood work done at Mckay dee. When they got blood work back it was showing signs of an infection. Due to Shanes past of course they wanted to be safe ad we went to primarys.@ Primary's they did more blood work, an iv, x -rays, checked his urine. All came back good no pneumonia  and the blood work actually had fewer signs of infection not to mention his fever went down. So they said they were thinking of keeping us for the night when they got the first blood wk but  Shane with the help of a lords blessing and many prayers came home  as exhausted as his parents, with no fever and less signs of infection. They have Shane's blood cultures to that they will get back today and I will follow up with pediatrician.Thank you everyone for your concerns!!!

Feeding Tube

As of May 26th  Shane no longer has a feeding tube! He had consistent full bottles in a row for a couple days. So I decided it was time to take it out! The only downer is its not as easy to give him his medicine now! :) I will figure it out! His cry and voice also seems like its getting a little louder so I think his new medicine is helping! Yay!

Swallow study/ Ent visit

Today we made our journey to Primary's for two appointments. Ears nose throat specialists then swallow study.

 First We met with an ears nose throat specialists for concerns over Shane's quiet cry, noisy breathing and possible sleep apnea. They put a tube camera down to look at his vocal chords. They saw that he has a swollen larynx or Larynx Malaysia "floppy airway" that gets irritated by stomach acid and his feeding tube. So they gave him reflux medicine to see if that will help, this all causes the noisy breathing, gasping when sleeps snoring exe.. They also saw that one of his vocal chords is paralyzed on his left side which is causing the quiet cry and that is a chord that is wrapped around the aorta so his surgeries had big impact on that chord .  they say it can come back after time hopefully by the time they are a year old. If it does not come back then he will just have quiet voice but won't affect his pronunciation of words but there is a surgery to fix it if it is needed. So all of those things were nice to know. 

Second we did the swallow study to test Shane's swallow and to see if we can take his tube out. He did not aspirate on thin formula but we will need to increase the amount he eats orally  slowly to what we give him total (7) ounces  before we can take tube out. This is awesome news Give it a week or so and he will have it out! Oh and Shane weighed 18 lbs 4 ounces! He will be 5 months on the 19th.No wonder my arms have been tired! :)  once again Shane is a strong little bugger making is way finally into "normalcy".