Eye Surgery Follow-up

It's a good thing we like our doctor because waiting 4 hours for anything is insanely ridiculous. This sign makes me giggle every time I see it. I think they should add "sleeping bag" and "cooler stocked with goodies" to the items to bring list.

We will wait in the hall, thank you very much! Crew is extremely frustrated by the fact that the toys in the waiting room aren't exactly "accessible" when you factor in the other 30 kids waiting to see the doctor. I've learned to steer clear of the waiting room because if the toys are out of sight it's easier for me to keep him happy. Instead, I dance and perform circus tricks for hours on end in the hall. He's not exactly thrilled.... Hmmm. Maybe I need to learn a few more tricks.

Do they really expect 100's of children per day to wait for that long and not turn into monkeys?

Yessss... Happy boy with straight eyes. Thank you Dr. H, the surgery was a success!

Eyes and Ears update.

Our Ophthalmology appointment today went quite well. I remembered to walk the halls with Crew instead of sitting in the waiting room (which he hates) and surprisingly he was still happy when we got into our room. The Dr. said he had never seen him so happy and I explained the waiting room drama.

Dr. reported that he will look out of his right eye if his left eye is covered but as soon as he uncovers the left his righty turns in. Crew will be having eye surgery again in another month. He also mentioned that if he needed tubes in his ears we could schedule that for the same time eliminating a second sedation.

We called ENT and they were able to squeeze us in at that time. Seeing ENT at the Childrens Hospital is a first for us but it will be worth it. Sure enough the ENT confirmed that he does need to get another set of tubes so we will be doing that at the same time as the eye surgery.

I asked about getting an ABR at the same time and so that is scheduled as well. The last ABR showed an increased hearing loss. We are curious as to whether that will be the trend or if the progressive hearing loss was a one time thing.

Until then, I'm hoping to squeeze in some fun this next month. I still have not taken my kids to the pool, gone hiking, camping, the zoo... NATTA!

The Next Step

Crew had his 2-month follow-up visit with the Ophthalmologist to see how the patching went. Unfortunately, it didn't. I wasn't able to keep the patch on long enough to make a difference and his right eye is still turning in. The Dr. prescribed an eye drop in place of the patch. One drop in his left eye each day... causing his good eye (the left one) to become blurry which forces the right eye to work harder. Oh, and his left eye is constantly dilated too. How sad is that!

We are on day two of the drops. He seemed fine with it today. I'm sure everything will be all right- I really just hate holding him down to administer the drop. We follow-up again in a month. The Dr. is talking eye surgery again but for now we just need to get those eyes straight.

He's coming along with the walker. Tonight I had to pry his fingers off the handholds to get him in bed. LOL. Last summer he couldn't move the thing through the grass and now he's climbing rocks. What a boy!

Oh, the rock pile is a work in progress. Hopefully, I'll be posting pictures soon of our latest attempt to improve the backyard.

Stinky Tricks

I thought I'd share my latest eye patching trick. Tonight when I put the patch on Crew he was so sad. He laid his head to the side and closed the other eye. I really don't think he is seeing too well out of his right eye. I had the bowl of icecream ready and at first he wasn't even interested. How sad is that??? Finally he came around and we spent the first ten minutes eating icecream. If I'm not holding his hands the patch will come off. I tried doing finger plays with him and he wasn't impressed. Then while laying on my back I sat him up on my stomach facing me and we did situps together holding hands. When I went down he popped up and vice versa. Crew thought this was hilarious and was giggling like crazy. This is a boy that also farts when he giggles and then giggles some more:) Needless to say it was one smelly activity.

Crew forgot about the eye patch during all those situps. Everytime I tried to stop he would get mad and then we would have to start up again. Oh, for ABs of Steel! We made it THIRTY MINUTES with the patch tonight! I think I could've made it longer if I had nose plugs and a hot bod!

Circus Tricks

I mentioned previously that Crew had his 6 month follow-up with the Opthalmologist. His right eye is turning in and the Dr. wants us to patch everyday for a couple hours. The patching isn't going well at all. It takes lots of icecream and circus tricks to keep it on for even 15 minutes- and that is 15 minutes of restraint as well. I've got to come up with some better circus tricks, I guess.

On a medical note: When I asked the Opthalmologist what he could see when his eye is turning in, he said, "Oh, its not like he is seeing double... he just isn't seeing out of that eye. His brain isn't registering anything". Um yah, the Dr. isn't well known for his bedside manner but he is an excellent Dr. and Surgeon.

We have a follow-up in two months but if the patching doesn't improve I think I will move it up. I'm seeing another surgery in the near future:)

Hey, do you'all have any new circus tricks I could learn?

Appointments Appointments

I've had so much to say this week but no time. I guess that is how the game goes. On Tuesday, we had Crew's 4-year Well Child Check. It almost seems silly to go to the Dr. for that when we are always at the Dr. anyway. Crew weighed in at 27 lbs. He is below 3% for weight and between 5- 20% for height. I'm just glad he's on the chart:)

On Wednesday we made two trips to Logan. When we arrived for our morning PT appointment the PT told us he had Strep. He said he had been on antibiotics for 30 hours but could be contagious for another 6 hours. He let us decide if we wanted to do PT. I decided to play it safe and leave but I could tell Crew really wanted to swing. I ended up staying and swinging with him by myself for 45 minutes. Sheesh, I'm really glad I drove over for that.

Later that night I hauled the kids to Logan again for a party put on by the Therapists. We were able to meet some of the other kids and their families. They had food catered by Panda Express and a carnival for the kids. Crew was really motivated seeing so many kids in their walkers and he buzzed around the place for awhile playing basketball, PLINKO, bowling, fishing and the Cake Walk. The Cake Walk was his favorite. He probably walked around that circle twenty times!

On Thursday we took Crew down to the Childrens Hospital for Botox. He got 8 injections this time. He did really well. Carl came and we discussed the Baclofen Pump with the Dr. again. We will probably go this route eventually. The question is when. I really want to fatten him up a bit before we take that route.

I made the trek to the Childrens Hospital again on Friday. Crew had his 6 month Opthalmology followup. His right eye has been turning in. We have to patch for a couple hours everyday for 2 months and then we will look at having another eye surgery. We patched him when he was just one and didn't have problems but now he is four! How will we ever keep that patch on him? If anybody has any experience or ideas let me know. He cannot be bribed because developmentally he just doesn't "get it".

On Friday night I made the trek back to SLC but this time it was for pleasure. One of the drug reps that comes to our office took the office to dinner at Flemings Steakhouse. Honestly, I'd have to say it was probably the nicest restaurant I've ever been to. I had the Petite Filet Mignon ... so yum! Carl took work off and we'll chalk it up as an early birthday dinner for me.

Today I survived another Blue and Gold Banquet with the Cub Scouts. We put on this skit. The boys laughed their heads off . We also had a couple pinatas which generated some good laughs.

There is so much more to say but I'm ready for this week to be over already.

Dr. Visits galore

Yesterday we saw the ENT. Crew's tonsillectomy was a success and his tubes look good. I had a nice visit with the Dr. about what this "progressive hearing loss" might mean for our future. I love going to The Lodge for appointments. It's only 1/2 mile away instead of the usual 30-60 minute drive. I took the walker and Crew loved "crewsin" around. When it was time to go home he threw a fit. Then, I drove him down to Walmart so he could practice navigating his walker. Taking the walker out in public is a post for another day.

Today was Opthalmology. We made the trek to the Childrens Hospital. In the waiting room I met a mother and her quadruplets! Whoa, that is so amazing. The quads are 4 years old and look great.

The eye appointment went well and Dr. whats-his-name gave a good report. The eyes are straight. Yeah! I updated him on the hearing loss and asked if he thought Crew was eligible for a deaf/blind intervener. He agreed that it would be to Crew's benefit to get one. He dictated a letter regarding the vision loss which I should receive in a week. I don't know what will come of it but its worth a try;) Thanks Lisa for helping me get tough!

Tomorrow..... Physical Therapy and Audiology for Crewman. Chiropractor for me:)