Monday, November 14, 2016

A little doctor visit update....

I have a few minutes before dinner, so I thought I would give a bit of an update after numerous doctor's appointments these last few weeks.

Jesse had an audiologist appointment at the end of October.  I almost cancelled it, thinking it was a bit silly.  The audiologist asked if I thought there were any issues.  I said that I really had no concerns at all.  Then I thought suddenly, "What if I end up eating those words?"   This test was not done at the Children's Hospital, so the woman seemed a little unsure of what to do once she found out that he was blind.  I actually felt pretty badly for her.  They ended up doing the testing by having Jesse put a ring on the stacking toy every time he heard a noise in the headset.  Both the audiologist and her helper were amazed at his concentration and accuracy.  The audiologist said that she was completely convinced at the accuracy of the testing because Jesse was so precise.  However - you saw that coming, didn't you? - it does turn out that Jesse has hearing loss in his right ear.  It is labeled as "mild to moderate", but as we found with Serenity, the average person would find it much more than a "milk or moderate" loss.  Some of the sounds that they were playing in Jesse's right ear were loud enough I could hear them plainly without headsets and there was a warning flashing on the screen about how loud the sounds were for the eardrum.  So much for my "no concerns"!  We will see an ENT next to see how to proceed from here.

Tomorrow Jesse will have a CT scan done of his skull and then see the craniofacial docs right afterward.  This will be our second meeting with them.  I do think though that we are not going to do any type of surgery for the nose unless there is some kind of surprise on the CT scan.  We think it would be best for Jesse to have some input into whether he has surgery or not.  He will still see endocrinology, a urologist, and the sleep study in the new year.  I need to look into an appointment with the ophthalmologist and dentist as well.

Serenity and Hope had their "round table" meeting with all the doctors in craniofacial last Monday.  It was a lot to absorb as we also saw the speech therapist, nutritionist, neurologist, as well as a variety of surgeons. 

With Hope, a couple new things came to light.  The muscle over the top of her lip is split because of her cleft.  This changes how she can use her lip - for eating and talking.  It is actually a pretty major thing.  It also turns out that repairing the cleft of her face would take at least two surgeries.  The first would be fixing the bone but the second (and following) would be repairing the muscles, etc.  This moves the surgery from the category of "purely cosmetic" to maybe more of a needed issue.  However, in talking with one of the main surgeons, he said that he would like to see the surgery in the next 5 years, but it did not need to be right away.  This brought a great deal of relief.  I just don't think she is ready for that trauma yet.  I don't think there will be a "good time" for the surgery, but I do think there are times worse than others.  So, we will check in with them again next year.

We did also have her hearing checked.  When I was asked if I thought there was a hearing issue, I laughed and said that I had already been wrong once in the last week, but that there wasn't anything I had seen to indicate one - that Hope was always the first to jump or respond to a noise.  Well, guess what?  She probably has a hearing issue!  She was extremely difficult to test as she wouldn't/couldn't respond to the standard testing setting.   But there are definitely markers for hearing loss.  (Next time we have a hearing test and they ask me if there is an issue, I am just going to refuse to answer!)  The ENT had already looked in her ear (and removed a popcorn kernel she had stuck in one ear!), so we know it is most likely not fluid behind the ear drums, making it more likely it is a structural problem.  The woman doing the testing wants us to see the ENT again (though I am not sure why) and try another hearing test.  If there is not more reliable results or if they think she needs hearing aids, then she will have to have a sedated hearing test like Serenity.  Part of me gives a deep sigh that now we are looking at at least 3 with hearing issues -with Peter and Lucy whom I am convinced have issues - still to go!  But part of me is also wondering if getting hearing aids will open up Hope's little world much further to us.  Still absorbing this information, even a week later.

With Serenity, we did talk more about her mid-face advancement surgery.  I don't know the technical name for the procedure they use, but they will go in through the same scar site on the top of her head and break/move some of the bones in her face.  They will then attach a metal halo to her head/cheek bones (much  like you see when someone has a neck injury) and every day we will turn the screws on the apparatus to move her mid-face forward by about 1 mm.  After the mid-face has been advanced as far as needed, the halo will stay on for a while longer while it all heals. It sounds like it will be a 1-2 month process.  It will effect her jaw - so eating and speaking - as well as around her eyes as the bones move forward and protect her eyes better.  It will bring her whole nasal area forward a great deal.

About a year ago, we were at Children's and met a little girl and her mom.  The mom said that Serenity looked "just like" her daughter.  We looked at her daughter and thought "they look NOTHING alike".  It must have showed on our faces because the mom said, "Let me show you a picture before she had her surgery."  We were skeptical but looked anyway.  Sure enough, they could have been twins!  It was breath taking!  But her daughter looked SO different than the picture.  I wish we had thought to take a picture at the time.  As time has gone on, it has begun to sink in that Serenity's looks will completely change after this.  That is really hard on my mama's heart.  Think of someone you love completely - and then think of their face changing into someone almost unrecognizable.  A little hard on the heart, huh?  I have been told by numerous parents that there is almost a grieving involved.  I have never heard from the child's perspective though - I wonder what she will think?

Anyway, it was also discussed that there is a good chance - but no guarantee - that the trach could come out about six months after the surgery after having another sleep study.  I want this for her so badly!  She wants to be back in the girls' room, not with me!  She wants to play in the bath and go swimming (which she does, but on a very limited basis).  She can't go anywhere without someone trained on the trach with her.  It is a very limiting thing - and she is beginning to feel it.  I would love to have all the tubes and monitors gone from her life.  The doctor said anytime in the next 2 years for this surgery.  My immediate thought was to try to get it done before Don goes to China to get Nora in the springtime (hopefully!).  But the doctors would prefer not to do it during "respiratory illness" season - which is completely understandable.  So, we are roughly planning on the end of summer next year.  We will work in the meantime at her using the "cap" on her trach during the day - kind of like practicing using a snorkel - you DO have to practice and keeping her as healthy as possible.  I am almost giddy with excitement with the trach possibly coming out.  We shall see what the Lord has planned.

Oh, and one other "update" - Grace did not have her surgery last month, we all got the flu AND a nasty virus that took that off the table. Four weeks of "sickies" was a LONG time.  I am going to try to get that back on the calendar after Christmas.  That is my time for today.  But a few fun pictures to share...









Until He comes....I will praise His Name!