Ready for Fall!

Avery's ENT Appointment

I took Avery in for her appointment with Dr. Carron today to check out this ear/hearing situation. It's so funny how different doctors appointments are now that she is walking and more vocal, lol. At least she has a good little personality (that is unless you are trying to examine her- then whewww!). She was smiling and walking up to another lady and her son who were waiting near us. She even shared her cheerios with her old NICU buddy Andrew, when we ran into him and Angela. Now, back to the appointment....I held the little fiesty one down while Dr. Carron tried his best to look in her ears (the nurse had her feet, lol), and the fluid is still on both ears. He said he thought she may have a temper when he came in and saw a red-head. Boy was he right. We will go back in 2 months to check them again, if she still has the fluid, looks like she may get tubes put in. If there is no fluid, then we will re-test her hearing. Dr. Carron didn't seem too concerned, and Avery isn't showing any symptoms of hearing loss, so hopefully, everything will be just fine in that department.

Avery's Hearing Test

Avery had to go to a follow-up visit with the audiologist today, because her last hearing test was pretty much inconclusive due to her being so young. They didn't think anything was wrong at the time, just thought she may do better once she got a little older. I guess that wasn't very accurate. She went today (Jake took her because I am trying to keep from taking off of work), and she tested mild to moderate. The audiologist said it could be due to the fact that Avery has fluid in her ears, so she scheduled an app. with the ear, nose and throat Dr. for Tuesday. Jake said that Avery did fine at first, but then got fussy and the test went down hill after that. How those tests can be accurate with a child her age amazes me any way. Once she got done with the test, they checked her canals, and that didn't go over well either (of course). Now, she will see the ear, nose and throat Dr. and go back for another follow-up. The audiologist says that there may be nothing wrong, but they can't rule it out until she passes. I don't think hearing is a problem for Avery due to the fact that her speech seems to be right on track, and she doesn't show any signs of not hearing well. The way the little woman keeps up with the beat of music makes me think even less of it all! Still, in the back of my mind, I know that hearing loss is associated with TS, and it makes me a little nervous. Hopefully, all is well, and we can rule it out with the next test. Other than that, she has an endocrinology appointment coming up. I don't think there will be any unexpected news there....she may have some blood work done to check thyroid, etc., but I'm thinking it will be more of a check-up to record information on her. She's expected to begin GH injections once she turns 2 this coming summer. Praying for her to keep doing well, and for her hearing to be PERFECT like her sweet little smile!

Start! Heart Walk 2010

This is just another one of those days, that I realize just how blessed we are to have Avery. We spent the afternoon in downtown Jackson at the American Heart Association Heart Walk, and although the crowd was a bit overwhelming when you have a little one, it was great! We finally got to meet a few online 'heart friends' in person at the MS Mended Little Hearts group area. We even saw our wonderful social worker, Gayden, and caught a glimpse of the surgeon we are all so very thankful to have at UMC, Dr. Salazar. Mom and Dad came to support us, and while Dad had to find a shaded area as he is not supposed to be in the sun too much, Avery, Jake, Mom and I all walked the 1 mile route to support heart health and research. Thanks to several wonderful people I know, Avery and I reached our donation goal, and we are thrilled about that! The Hinds Cheerleaders led a warm-up, and Avery was "getting down" to the music- it was so funny. All I can say is, " I wonder where she gets that from?". LOL. She even got a Red Survivor Cap- at least she wore it for a few pics! Hopefully, next year, Jake will be feeling better. He had oral surgery this week, and is still in pain and having complications. Any way, it was a good day for a great cause!

The AHA Heart Walk

This is a video I swiped from Catherine's blog, because I thought it was cute. Catherine said "Not only is it funny, it does a great job of helping you learn more about the importance of the funds raised by the Heart Walk. And the best part is the music video was put together by some of the physicians and staff at Vanderbilt Heart (the group that treats adult patients). I guess not only do they treat patients...they also sing, dance, and support the Nashville Heart Walk too!"
If you haven't signed up for our local heart walk, Sunday, October 10, it's not too late! Also if you'd like to donate, every little bit helps! I've almost reached my goal of $250- just $25 more to go, thanks to Gene Newman, Edie Newman, and Suzanna Flotta! I added the link below if you'd like to visit my CHH page...I'll be walking as part of the MS Mended Little Hearts Team.

I guess we know now!

While we'll never know for sure, our doctor thinks Avery's latest troubles are linked to the Similac recall. Our last 2 Similac containers were involved in the recent recall, which just makes my stomach turn. Because of Avery's weight, we've kept her on formula, along with table food and whole milk, to make sure she is getting all of the nutrients and calories she needs each day. When she doesn't eat much, we try to catch her up in the evenings with formula. Of course, she will always take a bottle. While we've wanted to lose the bottle completely, she will no longer take a pacifier, and has since had her bottle replace it. We only give her the bottle when she feels bad or is very tired and fussy to calm her, but hope to be completely off soon. Any way, now that I have given excuses, lol, let me continue my story. Since she got her last shots and began having the loose stools, etc. per my last post, we began giving her more formula and bottles because that is all she would eat. Apparently, this made things worse, due to the issues with the formula causing "gastro-intestinal discomfort" as their website says. We had almost completely finished the 2nd container by the time this recall was publicized. While I feel the 1st container, which we purchased at Kroger, was not contaminated, I believe the 2nd container from Sam's was contaminated. Her problems began around the time we started that container. As we gave her less formula, she got better, and as she started feeling bad again, and we gave her more formula, her symptoms got worse. I couldn't find anything other that the gastro discomfort for things that can happen. Our nurse told us the problems should discontinue now that we're off the formula. While Avery has been better during the day, and her BMs are no longer loose and causing rash/burn on her bottom, she is still having problems sleeping at night.
I guess it has to be the night terrors again. She wakes up between 12:30 and 1:00 A.M. each night, screaming, non-stop, as if she is in pain or terrified of something. We are unable to wake her and unable to soothe her. It just makes me feel so helpless and when it continues on through the wee hours of the morning, it makes me feel like I am going crazy. When she did it early on as an infant, I read that while doctors do not believe children have them that young, there were other parents out there reporting the same symptoms with their babies who were the same age. Avery hasn't had them for some time now, but the last week, it has happened every night. The formula could have made her stomach hurt through the night and added to it, but I don't think that it is the sole reason for the way she is waking up and crying. It just stinks when you can't do anything to help her. I'm going to do some more research this weekend, and see what I can find out! We have decided to no longer give her formula, but to start her on PediaSure and Boost for extra calories. A friend also sent me some other things to try, while our speech therapist also gave us ways to increase calories in her meals. Next step- to finally separate her from the Ba-Ba for good!

I wish I knew....

Poor Avery, she is having loose stools again. She had them for almost a full week about a week and a half ago, and her little bottom was terrible with diaper burn. I assumed that she had the virus that has been going around. She had her 15 month shots on a Thursday, and the BMs started on Friday. She ran some fever, but that is normal for the shots. Since she was still fussy and doing it on Monday, I called and our sweet nurse told me to put her on clear liquids for 12 hours and bland diet for 12 hours. She also gave me a great cream recipe for my poor baby's bottom (see below). The cream helped, and Avery did a little better with the loose stools, but they really continued until Friday. Any way, she began having them again last night, and had several today, so I called back. They told me to pick up Lactinex, and take a stool sample for them to drop off in the morning. Oh my, this should be fun. My child HATES having her diaper changed, throws a fit even if she is just wet. Now, I am supposed to wrap her bottom in Saran Wrap as not to let the urine contaminate the BM. You should have seen the first time I tried that...I am sure you can picture it and make a good laugh out of it, go ahead, I really don't mind! So, first time was a charm, I wrapped her, and she had a BM shortly after. However, getting the Saran Wrap off of her, they way my child kicks and squirms when changing her diaper...let's just say, NOT EASY! I don't know if it is contaminated or not, so I am going to take a few to be sure. Seriously, she looks like she is doing a head stand when I change her diaper because she arches her back and twists and turns in such a way, she ends up on her head with me holding her feet up! She is going to be a gymnast I tell you!! I guess we will see in a few days if there is something going on when the lab results return. I worry about her doing that, because it is so important for her to gain weight and eat well. Other than that, Avery has begun to have these "night terrors" again. I say again, because she did this when she was about 3-4 months, and it is crazy. She just starts screaming in the middle of the night, and you cannot wake her up or soothe her. No bottle, no rocking, no walking, nothing helps. We try to wake her and talk to her (which I have read is not the answer, but what do you do between 1-3 a.m.??) She gets really worked up as she cries- so upsetting. She just screams until she finally wakes up or she just stops randomly. I just hate NOT knowing what is wrong, and NOT knowing how to make it better. There is no telling what goes through that poor baby's mind when she goes to sleep at night with some of the traumatic experiences she has had. Say a prayer for her if you will, thankfully, God takes care of us every time, and I know it will be better soon. I'm just trying to keep myself from worrying now.
Love,
Megan