Ty Diary

Actual Age:  10 months
Corrected Age: 6.6 months
Weight: 17 pounds 1 oz (11/1)
Height: 26.75 inches (10/20)

Ty surgery update – posted Tuesday, Nov 16th

12:06 PM

Ty had surgery on Monday morning (


) at

7:00 AM

.  It was a bilateral eye repair.  They pulled they eye muscles back on the sides of both eyes and stitched them in a different spot to align his eyes.  The surgery was successful with a 15% to 20% chance of a second surgery later on.  Our biggest concern was putting Ty under anesthesia.  He did well this time with NO APNEA!  Thank you Lord!  Thank you so much for your prayers for Ty!  Ty doesn???t acclimate to anesthesia well and did have a very miserable 24 hours, thus mommy is worn out.  Yesterday he was either sleeping, eating, or crying.  He is such a sunshine boy that he didn???t even know what to do with himself when he felt agitated.  By

2:00 AM

he was finally returning to his happy personality and began flirting with the nurses:)!  He doesn???t seem to be in any pain but his eyes do seem to be irritating him.  His eyes  look straight but he will still cross them a bit for a little while until the muscles figure out what they are supposed to do now.  Even though his eyes are straight, something still looks a little ???off??? to me.  I think it is because he doesn???t use his left eye much so even though he appears to be looking at you with his left eye, it doesn???t look very focused. Hopefully this will improve as he begins using it more.  We will still be patching his right eye a couple of hours a day for awhile to help him gain strength in the left eye.   The insides of his eyes are very bloodshot.  His left looks worse but his red eye is yucky too.  You can???t tell this from the picture below because of the angle of the picture.  Both look pretty red though.

Posting as of 11/18
Ty has been his happy little self since being home.  His eyes don’t seem to be bothering him much.  The bleeding looks a little worse though as the blood has traveled.  I still think he looks "odd" because he isn’t really focusing well with the left eye but so far I am the only one that thinks this. 

One thing that concerned me a little bit was a "trembling" issue.  On Tuesday night I was holding Ty talking to Brooke and Daniel through the screen door and his whole body started trembling.  I put my hands on his arms and contained him and he stopped.  He did this 3 times.  I have no idea what this shaking was about and he has not done it since.  Scared me though.

The home health care company came and took all our oxygen tanks today!  Big step!  We still have the sat monitor and apnea monitor though.  I don’t want to stop using the apnea monitor until Ty is weaned off some of his drugs.  His satting is not as good as it was.  In fact, I wouldn’t be surprised if he failed a test if they did it right now.  However it is so borderline that it would be tough to say where the machine might be reading a tad off.  He looks fine and he acts fine and he is eating fine so I decided not to worry about it.  He seems to be averaging between 92 and 94 during the night (he is supposed to stay at 93 or above all night).  I have had to set his alarms at 89 (as opposed to the 92 that I had previously set it at) or he is alarming all night long.  I told the Pulmonologist’s office this but his night study was sooooo good that they aren’t paying attention to this.  I could argue the point and maybe I should but so far I really do think he is doing okay so I am just watching him closely.  He is falling into the 80’s a few times a night but he is only there briefly.

Guess who decided to roll from tummy to back today???? Yep!!!!  I now can officially say that Ty will roll over BOTH directions!!! Yippeee!  Now I will have to get a bigger rug for him because I figure he is going to start getting himself across the family room simply by rolling.

Physical Therapy Evaluation
We have temporarily postponed Ty’s speech therapy and occupational therapy.  Both of these therapys cannot be done "in house" and we don’t want to take him out yet.  We did find a mobile PT unit though that will come to the house and they evaluated him yesterday.  Overall, he is doing pretty well but does need some strengthening exercises, especially in the upper body.  An online friend wrote me this week about a Bumbo Seat that might be useful for Ty.  I checked it out online and ordered one.  It is the coolest little foam chair that does not require straps but conforms to babies lower pelvis area in such a way that it helps them learn to sit up.  The PT thought this would be great for Ty.  You can use it on babies 8 weeks and older.  Here is a link if you are interested.  (Thanks Michelle!)

More good news to report!  Ty is eating many different baby food flavors this week!  Turns out that he will eat anything I put in his cereal bottle as long as he can feed himself.  Apparently, he has either gotten past the taste issue, or it was not food taste aversion to begin with but an aversion to the spoon (or an aversion to mom feeding him?).  I have not tried the spoon again this week.  My first goal was just to get him to eat so I want to get him well established with eating solids and then I’ll give spoon feeding another try. 

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