Thursday, March 19, 2009

March Madness

Basketball is in the air! We love this time of year.

We started off last weekend with Lindy getting a cold. On Saturday her nose was running a little bit. Her nose hardly ever runs. Drew put her down for a nap and he kept hearing her coughing loudly. When he was checking on her she woke herself up and was pretty upset. She then proceeded to throw up all over Drew! I'm sorry I was out with friends and missed that ;) That night was a pretty rough night. She went to sleep okay but 20 minutes later she was hacking away. Just the week before I had asked the doctor if it was possible that her nose doesn't run. She said that everything probably drains down her throat. We think that everytime we'd lay her down the stuff would run down her throat and pool back there. I ended up in the recliner with her that night. Sunday we started giving her sauna baths. We'd take her in a hot steamy bathroom and try to open her up. We've done this a bunch this week trying to open her up. I've suctioned and suctioned and hardly ever get anything. Between the steam baths and raising her bed to a near vertical incline, she finally started sleeping better. She was so sweet to pass her cold off to Will. Will's nose on the other hand runs like a faucet when he has a cold. He woke up one night crying pretty hard and actually let Drew rock him back to sleep. Lindy still sounds stopped up and Will's nose is still running some but they are fine now.

The beginning of the week was busy but the end was pretty boring. Monday was a busy day with three appointments. Lindy and Will both had swallow studies. It has been about 4 months since their last one. Last time they both surprised us. Will had made no progress and Lindy regressed and had to go back to honey consistency. We were anxious to see what, if anything had changed. Nothing changed for Will. I think he'll be drinking nectar consistency liquids until he is 18. By watching his tongue and where he starts his swallows they can tell his tongue isn't cupping quite like it should. Our OT is going to send me some exercises for his tongue to see if we can get it stronger. Lindy on the other hand did really well and made good progress. She did well with the honey consistency so we tried her on the nectar consistency. She did excellent with the nectar consistency so then we tried plan whole milk. She immediately aspirated it though! Oh well, she did move up from honey to nectar. We'll take it. We also had both kids eat little bites of a pb&j sandwich, yogurt, applesauce, and some fruit and they did well with those. I took fruit because I was wanting to see what they did with it. Not surprisingly, Lindy pretty much just swallowed it. It did go to the right place though. Will chewed up the fruit better but he actually penetrated (let a little go in his airway, not a complete aspiration) some of the juice from the fruit. So we just have to make sure the fruit is drained well.

After their swallow studies, Lindy had an ophthalmologist appointment. For the first time ever she responded to the Teller Acuity cards. She noticed down to 4.8 cm/cycle. I asked what that meant and he never had an answer for me. I just know that she is usually more interested in the big gray board than what is on it. They also dilated her eyes and he says her vision is a -26.00 in her right eye and a -17.00 in her left eye. He had a resident or some type of medical student in the room with him and when he said those numbers the guy was like, "Wow." I thought that was so rude. He needs to keep his comments to himself. We know her vision is bad, we don't need comments like that from the peanut gallery. I don't know how anyone with that kind of vision sees at all. I have a -4.25 and a -.3.5 and I feel like I can't see. I just don't know how she sees. But she does. She sees so well that we often forget she has vision problems. I just can't wait until the day when she can tell me what she sees. It's a little worrisome that he keeps saying her vision gets worse everytime we go. I told him that people are forever asking me what her vision is. He said there just isn't a clear answer right now. He said to tell people that in her right eye her vision is probably worse than legally blind and in her left eye it is probably better than legally blind. So still no 20/20 type number. We are to continue to patch her eye 2 hours every day. I was seriously hoping to discontinue that because it is a horrible two hours every day. For the entire two hours she works to get the patch off. It usually requires someone holding or sitting very near her for the entire two hours. If you so much as turn your back on her she'll have it off in no time. No relief from the patching though. He made the statement that he is making an investment for her future vision. Trying to make that eye as strong as possible.

Our only other appointment for the week was with our deaf and hard of hearing teacher on Tuesday afternoon. Most week days we do her Learn to Listen sounds. Lindy (as well as myself) is getting SO tired of them. As soon as you bring one out, she raises her hand to tell it goodbye. Sometimes we use a box with a lid on it and she has recently stopped reaching in and getting them out of the box. If she does take the animal or object she throws it behind her! It's obvious she is getting very bored with them. But as part of her hearing therapy we need to do them. It is getting harder and harder to do them because I know she isn't much interested in them. She is still saying "aaaa" after quite a few words now. Our hearing teacher said if that is the only sound she can make then she is using it for every word she is trying to imitate.

I lied last week when I said the kids had gotten their last Synagis shot! The nurse called and said they both have enough medicine left in their vials for another shot. She said if we don't want the shot then they would throw it away. Since it's there and been paid for I figured we should give them that one last month of protection. April is when it's generally considered safe to take them out and do a lot more, but you can still catch colds and RSV. If I can protect them one more month then we'll do it. Sorry Lindy and Will, I really thought we were done!

We have continued to work on self feeding this week. Will is doing awesome! He is so close to basically feeding himself every meal. Most of the time now we just set it in front of him. He still needs a little help depending on what the meal is but he's doing well. He even stays relatively clean! He seems so much happier at meals now. He used to be so loud and screaming at us and now we hardly hear a peep out of him. Meals are so much more pleasant. Lindy is another story. If you hand her a filled spoon she does great. But I can't get her to put the spoon back down in the bowl of whatever food. I think for the first time I can really tell where her vision is a problem. I try pointing to the food down there but she just doesn't see it or get it. We'll keep working on it. It's definitely something we'll be talking to our vision teacher about.

We have 30 days left until the March for Babies walk. We have gotten a lot of donations over the week but we still want more! We've had some new people donate to us but would love for everyone that supported us last year to do so again. Please let me know if you are considering walking with us. Only a couple people have seriously mentioned it. We want you - and your donations!!

Enjoy some pictures of our week. We had lots of silliness going on this week!

Will has started climbing in and out of things and furniture.
He couldn't figure out how to get down. He was up there at least 5 minutes before I finally helped him out!
We played with bubbles for the first time! Lindy seemed to enjoy it more than Will.

Silly babies. Lindy was on the ground so Will laid down to be like her!
Who knows what was so funny! Will's new favorite activity, watching TV. He was watching the basketball games yesteday. He's been pretty worried about his brackets lately!
Silly Lindy.
We took a wagon ride outside yesterday.

I gave each of them a daffodil from our yard. They checked it out for about 3 seconds and then both started tearing them apart. They were pulling off petals as quick as they could. I had to take them away quick as they then tried to eat them.

"Shoulda had a V8"

Riding in the wagon is exhausting.

A rare after dinner treat. Suckers!


Anonymous said...

Your kids ability to feed themselves amazes me. My 2 year old still struggles...a lot. Even if I put the food on the spoon for him, he still manages to lose most of it before the spoon makes it to his mouth. He always ends up giving up and saying his baby version of "here Mommy," and giving me the spoon. Oh well, I guess he'll get it some time. Cute pics by the way. They are growing so much! I can't believe they'll be 2 this summer! My how time flies!

Paulette said...

Angela has not really been trying too hard to get Bryce to feed himself with a spoon. She is still putting his food on his highchair tray and letting him feed himself that way. She does not look forward to the self spoon feeding!!! Bryce will be 2 next month.

Someone needs to tell that Resident to keep his mouth shut. His job is NOT to make the parents feel uncomfortable.

Lindy is a beautiful little girl. She has such a pretty face. Will is also just adorable and very handsome.