Hearing Aids Are Here! (sung to the tune of Christmas time is here)

Can't see them very well in these pics

best picture I was able to get for now

sitting in boppy

Maddy's ornament for her first Christmas

Aaron's first Christmas ornament his mom made him.

Well we did it. We got Maddy hearing aids for Christmas. :) When we were at Grandma and Grandpa's we were all talking about how much the average family spends on Christmas presents. Aaron looked it up and it turns out that the average American spends over $400 PER PERSON on Christmas presents. Yikes! So we decided we'd count Maddy's hearing aids as a Christmas present so we could brag about how much we spend on her for Christmas. haha!

So we went to the Callier at 8:30 this morning and waited about 30 minutes in the waiting room. I think our doctor is just slow because while he was working with us a nurse or someone knocked on the door and it sounded like he was supposed to have been with somebody at 9:30 and it was about 15 after ten. That is okay. Getting hearing aids is a big change and while it's not learning a medical procedure that could be life or death it is nice that he is willing to just take his time with each family and make sure that they understand everything about how to use them, take them in and out, and answer any questions. He said that from looking at the ABR it seems from what we know right now, Maddy's hearing loss falls entirely in the moderate range and her hearing loss is flat. What this means is that she hears all sounds equally so consonants and vowels are at the same level of hearing for her. I guess some people have hearing loss where either consonants or vowels are easier for them to hear. She go the smallest hearing aids possible so that was good. If she would have had to have the larger size we would have had to tape them on her head but thank goodness that didn't happen! He showed us how to fit the ear mold pieces into her ears and let us practice taking them in and out a couple of times. She will wear them at all times except for bath and going to bed at night. If they bother her and she can't sleep during nap time we can take them out then but I don't think that is going to be an issue. She fell asleep fine with them in this afternoon. As soon as he put the first hearing aid in you could tell that she was hearing something different. She got really quite and just looked and looked at the doctor while he was talking. Then she started talking pretty loud. He said that is normal and a lot of kids will get a lot louder for a while because they can actually hear themselves and think it sounds cool. We did not do any tests or adjustments on the hearing aids today. He said he put them at a pretty conservative setting as far as volume goes. The goal right now is to get her used to having them in her ears and hearing more sound and to get us used to helping her keep them in and use them. We go back in January and they will do some behavioral tests to try to determine how everything is working then. He said if they try to do those tests right away they just don't work as well because the kid has had no time to get used to what they are hearing or had any time to learn how to process the new sounds they are hearing. So Maddy looks super cute with her hearing aids. They are not nearly as noticeable as I imagined they would be. She looks like she has headphones and is rocking out to her favorite tunes. It is very cute. She was really going for the camera and moving around a lot when I was trying to take pictures of her so most of them are blurry. I will try to get better ones soon. I think they have made her feel a little insecure because as you can see she had to have her paci to be okay about posing for the camera. She was a little upset when I put her on the couch. Plus the one on the left side is hard to get in and it falls out super easy right now cause I can't get it in right so I had put it back in a couple of times and it makes her really mad when you put them in. We'll see how it goes. I'm praying we figure out a knack to putting that one in and making it stay soon.

Other things that have been going on since I fell off the face of the blogging world a couple of weeks ago:

• I got all my papers done for my classes. I finished on Saturday. Yipee! Huge weight off my shoulders.
• We put up our Christmas decoration and the Christmas tree
• Maddy decided that she could play on her tummy for a few minutes without getting mad
• We had Aaron's freshman biology class over for dinner on Saturday. Eleven people signed up to come and one showed up so we had a lot of leftovers and a very irritated professors wife. No more freshmen!
• We had our first freeze Friday night.
• We went to West Texas for Thanksgiving and had a great time visiting family on both sides (of my family that is).

Next Friday we will be headed to Colorado for Christmas. The Christmas season is zooming by. God has blessed us greatly this year and we are super thankful to finally have Maddy's hearing aids!

One Year Ago Today

One year ago today we found out we were having a little girl. One year ago today, the OB called us into his office and told us that Maddy was not going to survive. One year ago today God heard the prayers of many friends and family and he started working a miracle. One year ago today I thought I would never see my precious little girl alive. One year ago today I was so shocked I didn't and couldn't feel anything but disbelief. One year ago today, God started planning that today a little girl named Madeline Mae Fletcher would be by my side as I write this, talking and playing with her stuffed cow that Aunt Tammy gave her. One year ago today God set out to prove that he is faithful and he hears his people's prayers and that he still does miracles. Today is bittersweet because one year ago today our dreams and plans we had for our new life with our baby girl were destroyed. But one year ago today God started making a new plan to give us a different dream and a different plan. In some ways this has been the hardest year of my life, but God in his wisdom gave me exactly what I needed when I needed it and I have seen God provide in ways that I had never imagined before. One year ago today, God started revealing himself in a deeper way to me that has changed my life. I am so thankful for one year ago today.

My daughter sees 6 specialists and 2 therapists...why is my pediatrician appointment always the most stressful of all of them?

Pediatrician check ups always stress me out. I know it is because of this whole weight issue. Every time we go in I know he is not going to be satisfied because she is still not on the chart with her weight. Today Aaron went with me so it made it a little better, but I still left the office feeling like a horrible mother. Maddy weighed 10 lb 13.5 oz so we are creeping toward that 11 lb mark we thought she was at a couple of weeks ago. Still, she has gained a lb in 1 month. Between August and October she gain 1 lb so this is a big improvement for her. Still not good enough though. This time he decided that she is not getting enough calories. She is eating about 23 oz a day which we thought was doing pretty good. Nope. She needs to be eating 28 oz minimum and he'd like to see her eat 30-33oz. Sometimes I feel like I am doing something wrong, but when your child starts screaming and punching the bottle away because she's had enough there is not much you can do. She is eating more and more solid food so maybe that will contribute a few extra calories although I know it doesn't do much.
So far she loves fruit, especially peaches. We haven't tried a fruit yet that she doesn't like, though pears are definitely her least favorite. She really loves carrots and sweet potatoes. When she eats carrots she makes ummy noises. It is hilarious. She still doesn't like peas much. She will eat a few bites but that is it. I still offer them to her because I want to give her a chance to learn to like them but I don't push eating them. Not yet anyway. That comes later. The verdict is still out on green beans. Aaron tried to give them to her last night but she was way to tired to want to cooperate with eating from a spoon. She has gotten really good at opening her mouth wide for the spoon...if it's something she likes. If it's peas, she can shut her little mouth up tighter than a clam and she puckers her lips out just to make sure that you understand she does not want that nasty gunk in her mouth.
We have been really working on trying to get her hips stretched good every day. She is finally able to sit by herself for a little bit-still less than a minute. She tips over pretty easily because her hips still don't go down quite far enough to really help her maintain her balance. She loves sitting up and playing though, which is good because we can get some good stretching in that way on her hips without her getting mad.
So she is doing really good it seems. It is just hard to not worry about the weight issue. If adding extra calories does not work then we will go see a nephrologist. I have no idea if I'm spelling that right but it is a person who looks at kidney function. I guess there is a possibility that poor weight gain can be due to kidney function and she may not be eliminating acid out of her body like she needs to. We have an appointment with Dr. Honeycutt in a month and he may want to get some tests like that done anyway just to make sure she is still asymptomatic with the tethered spine stuff so if that is the case we may can kill two birds with one stone.

And More Blessings

I am not sure what she was doing but this picture is hilarious!

Well God just added another thing for us to be thankful for and something I just had to share. For Maddy's hearing aids our insurance only pays $1000 for hearing aids every three years. Fortunately we don't have to replace the actual hearing aid piece very often but we do have to get new ear pieces, fittings, etc. as she grows. Aaron has been talking to the HR lady, Tamy Rogers who is a sweet and wonderful person and helped us when the insurance was trying to get out of paying for my pregnancy, over the last few days to see if we can talk to insurance into giving us more money for Maddy's hearing stuff. They regard it as a quality of life issue and we are trying to say that for now it is not quality of life but a medical necessity so she can learn how to talk!!! All very frustrating. So we were going to have to come up with about $2500 before December 8th to pay for the part with the hearing aids that the insurance isn't paying for. Well somehow all of this got back to a sweet and amazing lady with a wonderful husband who cooked the best brisket I've ever tasted for us when Maddy was born, and she found Aaron today and told him that her and her husband would like to give us $1000 to help cover the cost of Maddy's hearing aids. I don't know that we were horribly worried about paying for the hearing aids, but it was going to be a little tight to come up with the money that fast, and God provided through the very kind hearts of some people from DBU. I feel so awkward taking money from people but we cannot turn it down when someone desires to help us in this way. Aaron and I both agreed that we hate it when people won't let us help or give to them, but it is kind of tough in a way to be on the other side a be the gracious receiver sometimes. I guess because you have to humble yourself and admit that you need help or it would be nice to have help and you have to admit that you are not able to take care of everything and control everything in your life. It has been awesome to see how God has provided in so many situations this week. I really needed that because I have been struggling with feeling overwhelmed with day to day school and therapy for Maddy and it is good to see that God is in control and cares about what we want and what we need.

Normal

Just a quick note to let everyone know that Maddy's labs from the endocrinologist came back normal. Thanks to everyone who prayed for her about this over the last month or so. Now please just keep praying that she will gain weight and that she will be the size she needs to be for her. So thankful for this good news this week as well as the news for Brandon and Amanda and kids.

Hearing Aid Fitting, Endocrinologist Appt

I guess I should start with the endocrinologist appointment. We went to that on Wednesday. Their scale showed Maddy's weight as 10lb 10 oz. What happened to 12 oz?!?! She did have a wet diaper and onesie on when they weighted her for the ABR but I seriously doubt that it weighed that much and I seriously doubt she lost weight in one day. So it is a mystery so apparently she didn't weigh as much as we thought but she had still gained close to a pound in two weeks which is still great. Nothing in the consultation jumped out at him so he ordered blood work. We got that done at the hospital right after we saw the doctor and should have the results in 10 days to a week. He is looking at thyroid levels, growth hormone, iron levels, and some enzymes that indicate nutrient absorption. So we shall see. Maddy was a trooper for the blood work. She cried of course but she seriously handled getting her blood taken better than I handle it. Once they got the needle in she was fine and pretty much even stopped crying. I had to hold her arm while the phlebotomist searched for the vein. That was not pleasant.

Today's appointment was really cool. They made molds of the inside of Maddy's ears so that they can make the ear piece for her hearing aids. It takes about three weeks to get them made so we will go pick them up on December 8th. The Thanksgiving holidays are making it a little longer til we can get them. She will have pink hearing aids with ear pieces in pink and white swirl. Very cool. I did not know they came in colors. I figured she'd just have the ugly flesh colored ones. The hearing aids are pretty pricy but thankfully we just have to replace the ear pieces every six months, not the entire hearing as we first thought, which totally makes sense. I'm really excited for Maddy to get her hearing aids but it will be a challenge as well. She will have to get used to all the new sounds and to having something in her ears all the time. The doctor told us that kids usually try to pull them out for a while but once they get used to them they will actually start crying if the hearing aid falls out. So anyway, just a few more weeks and we can start the hearing aid adventure.

I have to give a presentation for my Shakespeare class tonight. I hate giving presentations but we are having a beautiful day in Dallas so at least I have some time to hang out with Aaron and Maddy and enjoy the day before I go to class.

Hearing Aids on the Horizon and Weight Gain!!

We probably take a picture of ourselves by holding the camera at arm's length about once a year so we don't have much practice. It took several attempts to just get one that all of our heads were in so it is what it is. :)

Maddy in a super cute jean skirt from her 3-6 month drawer. She looked so cute in it for church on Sunday!

Today we had the ABR. Hopefully this is the last one because she slept through it very well with the help of the sedation medicine and they were able to complete all the tests they wanted to get done. Things hadn't changed much even with clear ears so it looks like we'll be keeping our appointment on Friday at the Callier Center at UTD. This is where they fit young children for hearing aids. I am not going to say that is 100% sure though because we've got to talk to Dr. Gamble on Thursday first but since nothing has changed this was kind of the plan we were given to go with if there was hearing loss so it is the schedule I'm anticipating.

On the good side of news, Maddy was 11 lbs!!! I just about passed out (okay maybe a little exaggeration :) ) when the nurse told me she was weighing in at 11 lb 6oz. Her diaper was wet and she had a onesie on so the nurse subtracted off 6 oz to be safe on the amount of sedative to give. She has gained a little over a pound since the 15th of October when she weighed 9 lb 14 oz. I am wondering if getting her ears clear and her ear infection cleared up helped out with that, or maybe it just happened it was time for a growth spurt. Anyhow, I was so excited and thankful to hear that. She still hasn't quite doubled her birth weight but she is a heck of a lot closer to doing that now than she was. She needs to gain 12 more ounces to do that. Our endocrinologist appointment is tomorrow. We will see what he has to say. It is just a consultation but I feel a lot better about it now that I know she has gained some good weight in a short amount of time. I thought she might have gained a little because she felt a little heavier and she has started to fit some of her 3-6 month outfits.

So today came with mixed emotions but a lot of thankfulness. I am sad that her ears are not working properly on their own but I'm so thankful that we got a good ABR and that it looks like we will be able to have a fairly painless solution to helping her hear normally and I'm also thankful to find out about the weight gain! Blessing and more blessings.