Sunday, October 23, 2011

On Thursday we went to go get Skyler's ears "tuned up".  It was his follow up appointment to check his hearing aids to see how they are working out for him.  With his hearing aids in it makes a huge difference but he still has been saying huh alot.  Definitely not as much, but I could tell they needed to be adjusted a little.  Thankfully PCMC has an office here in Bountiful so I didn't have to drive all the way up to the hospital.  The first thing the audiologist had him do was another hearing test in the booth, but this time with his hearing aids on.  Without them he has minor loss with the lower tones in both ears and a very significant loss in the high tones in both ears.  With them on he tested in the normal range with the lower tones and the higher tones were alot better.  He still doesn't hear the higher tones in the normal range but its a big improvement so for that Im grateful.  After the booth she put his results into a computer and then reprogrammed his hearing aids according to these new results.  I've already seen a big difference!  We will go back in a couple weeks for another follow up.

I was so proud of him because he did great in the booth this time.  He sat through the whole thing and was trying so hard to hear the sounds. 


That's the little machine that programs the "hearing eggs".  Before Skyler got them he obviously couldn't hear well so he thought we were saying hearing eggs, he has called them that ever since.


Today Skyler had another first.  His first bath in over a year!  Of course I still bathe him, but I give him sponge baths because he cant get his line wet.  This is definitely one of the downfalls of still having his dialysis catheter still in.  They do make safe guard things that go over the line so kids can still get in the bath but its sticky and it pulls Skyler's central dressing off so it just didn't work for us.  I still wanted him to be able to just sit in a warm bath a play so I came up with what I think was a brilliant plan....saran wrap!  I just wrapped him up and put him in the water.  It worked great and he was able to finally have a bath.  He played in the water forever and I kept having to refill the bath with warm water.  His hands and feet actually pruned!  Haha I never thought I would be so excited about pruned hands.  Its amazing the things I find so wonderful now.  You just never know what you really have until its gone.


 Such a cutie!  Don't worry he can still breathe, it looks tighter than it actually is.


9 comments:

Hilary said...

He looks so good! I don't know how this would work for you guys, but when my sister had surgery they told her to use press and seal wrap around the incision. I wonder if that would work with him? If not, it looks like the saran wrap worked great! And I'm glad his hearing eggs are working out for him. It took us a few tune ups before we found just the right settings for Jayden, so hang in there!

lozanobev said...

Let Me just say your family is so nice an loving I'm so happy I got to meet Skyler, you have no idea how happy my whole day was after that! I'm happy my kids got to meet him also we talked about him for about the whole night ;0) he inspires me an my family so much N for you what a Wonderful Beautiful mom you are...Bev

Sally said...
This comment has been removed by the author.
Sally said...

I love that he calls them "hearing eggs". So appropriate! And I see somebody already mentioned it, but try Press and Seal. Our home nurse told us about that when Annabelle first had her line put in and that's all we use at home now. Much easier to get off than AquaGuard and doesn't stick to the dressing, but makes a great seal and keeps water out! Here's to many more real baths, Skyler!

Chelsie said...

Wow! He looks so great, Crystal! I'm just so freaking happy for you two!

The Breckons said...

I have been so amazed at his journey and the strength both of you have shown! I saw it above, but Press N' Seal is amazing! I used it a ton with my kids IV's, ports, etc. It really does create a seal and then is easy on the skin when it comes off. I'd make a square over the area you are going to cover and then use another piece(s) to go around again. Please know that many people are thinking of & praying for both of you!

Erin said...

He looks so happy to be in the bath! I see the others have already mentioned Press 'N Seal. We have even used it to keep Nolan's emla cream in place over his port.

It's great to hear that there is such improvement with Skyler's hearing with the hearing aids.

Erin

suzie said...

He is just darling Crystal! Another thing people take for granted (just jumping in the bath or shower without a second thought). I can't say it enough and NEVER will stop saying this...Skyler is the MOST amazing little boys and such a pillar of strength! I admire you both sooooo darn much!

*suzie

Eisha said...

hearing eggs... made me smile!