…..’til the sun comes up!:)

Age: 11.7 months
Corrected Age: 8.2 months
Weight as of today: 19 pounds
Length as of today: 30 inches (did he shrink an inch? how are we always an inch off?)

If anyone has had the energy to read my drama stories of the week, you already know that I am struggling to keep myself sane. What is particularly annoying is that I can tell that certain individuals (certain nurses), observe my cycle of ending relationships with care givers (home health care, certain Dr.s, pharmacuetical companies…) and make the assumption that I am difficult to work with. I can almost hear the sigh in their voice when I explain why I have switched companies. Those that have been following Ty’s story all year though, have seen more specifically why I make these decisions…why I must make these decisions. I appreciate the comments that you have left on these posts because they have served to validate my stress over these constant challenges. Not only are they validating, but it is also fun to be able to share the responses I get and I know other people love reading them too. Jodi (for example), loves to check out new comments every day so if you aren’t doing it for me…do it for her LOL!

Ty did get his shot today (thank you Jesus) and I did get the aldactizide issue handled in the 11th hour this afternoon. I found a new compound shop close to home and the pharmacist was so easy to work with and responsive. Thank you for praying for these situations.

Now let’s get off this annoying subject and talk about something else:)

Physical Therapy Update

Ty can sit up for a minute or two on his own but he doesn’t like too so you have to distract him. Once he realizes he is on his own he is looking for mama and he grabs for me quickly. He is trying to climb using my body as his jungle gym. This is a good sign because he is trying to use more than just his own weight to manuever. Next stage will be pushing instead of pulling. He cannot pull himself to a standing position yet but he wants too. When on his tummy, he is learning to let his legs rest on the floor. Usually they are bent at the knee and not in a rested position. He really wants to army crawl but can’t quite figure it out. I was watching him this week as he was trying desperately to reach his bottle on the floor. He stretched and stretched his arm but to no avail. Finally he put his head face down on the rug and just cried. So sad and so cute.

Speaking of his pout…

He has the most precious pout you ever saw. He gets his lower lip out and wrinkles up his nose and forces a sad (fake) cry. His eyes are lit with laughter though and try as he might, his eyes betray him. It is hilarious to see! It’s as if he is trying so hard to be sad but can’t quite munster it up. Of course sometimes it is real and then it truly IS sad.

Speech Therapy

The therapist has been having me feed Ty little bits of stage 1 baby food every day using a syringe. If I put the syringe in his mouth and deposit the food where his back molars will be, the food is set back so far it triggers an automatic swallow. Babies automatically tongue thrust and they have to mature out of this. By putting the food so far back the tongue thrust doesn’t force it all out. Using the syringe I have gotten him to take about 3/4 of a jar of stage 1 sweet potatoes in one sitting. A baby step for certain but a step in the right direction still. He is still starting some choking fits 10 to 15 minutes after feeding solids though. I can’t figure this out. He has a modified barium swallow scheduled for the end of Feb but I doubt we’ll find the cause this way.

Teeth

Ty’s 2 bottom teeth are right below the surface! They have not cut through yet but they look like they could soon. In a way this would be rather inconvenient at the moment because I have my fingers in his mouth a lot with speech therapy and the kid bites hard without teeth.

Eye Dr.

Ty had his follow up eye apptmnt this week and the Dr. does agree…Ty needs a second surgery. Sigh….. Before surgery his eyes were turning in at 70. The surgery perfected them but over the last few weeks they have started turning in yet again. Right now they are at a 25. His eye Dr. would like to see us try glasses for Ty before scheduling a second surgery. She explained that when a baby is esotropic it is often because they are far sighted. Ty is far sighted and also has a stigmatism. His site several months ago was a +4.00 in both eyes. His site is better now at +3.50 but part of this rating is due to the stigmatism. Because he has trouble seeing close up, the strain used to focus on close objects causes his eyes to cross. If glasses cleared up the vision and he didn’t have to work so hard to focus, theoretically, the eyes would not cross and in time the muscles would get used to their new position. Because he is only at a 25 it is reasonable to believe that glasses could clear up his remaining esotropia (possibly although not positively).

The problem of course is how in the heck we will get him to wear them. Our little curious george is constantly on the move. If he isn’t in to something he is looking for something to get into…ALL the time. Jim put his patch on him tonight (we have been unfaithful with this lately due to the struggle) and he had to entertain and battle him for an hour. Ty was constantly trying to get to the patch and Jim was doing everything he could think of to distract him. At one point he nearly safety pinned his shirt closed so he couldn’t get his fingers through the sleeve to pull it off! Desperate times call for desperate measures. We finally quit after an hour and Ty ripped that puppy right off. When I took him to the eye dr. to try on glasses he had them off in about 10 seconds. These glasses are so cute and tiny and they have a wire frame that wraps around the ear more securely (which does not do a darn bit of good). I see a second surgery as being inevitable but I did agree to try glasses. The Dr. thinks that if Ty see’s better he may end up liking the glasses. Makes sense in theory but I really doubt it will play out that way. I suspect that Jim and I are going to be begging for a reprieve after this endeavor. I ordered the glasses so we’ll be testing this theory soon.

I realized while trying on Ty’s glasses that Ty is going to get a lot of attention when wearing them (if he will). We finally got to the point of no chords and oxygen and people thinking he was just a “normal” baby (not that many people see him;). When I was testing different pairs of glasses on him, the whole lobby was oohing and ahhhing. I have to admit, he did look adorable:).

More Appointments

Ty will be seeing his pulmonologist, neurologist, pediatrician, and GI specialist this month. Next week the pulmonologist is likely to pull him off all monitors. I know it is time for this to happen but I am dreading it. He will never know what his mamma went through his first year of life! I am glad I am writing all this down.

Aaaaghhh! He is scratching the speaker screen on the TV again…gotta go!

P.S. Did I mention this new wordpress blog doesn’t have a spell checker? I don’t take much time to edit what I wrote due to time so please excuse my errors:)