Oh. Don't get me started.

So after the kids' audiologist appointment I took the kids to McDonalds. The only people in the playplace were two mothers and their four boys, probably all between the ages of 6 and 8. The minute we walked in, one of the boys immediately yelled out, "Lets get the baby!" And they all proceed to follow Carter around. At first I wasn't worried about it, cause they weren't touching him, but then I started hearing things like, "You get the boy and I'll get the girl," and "Get em guys, get em!" and "Kill the babies!" All lead by this one particular boy. So the other boys dutifully followed Abby and Carter around constantly, and turned it into a hunting game. Meanwhile, I could hear the two mothers, who were out of sight, just chatting away, no clue what their hoodlum boys were doing. It made me really upset. I know boys like to play those kinds of games, but I didn't like it that they were including my children, who had no clue what these kids were threatening.

At one point they had both of my kids completely surrounded in one of the enclosed common areas. One of the kids accidently tripped Carter and the "leader" shouted out, "Trip the baby! I'm going to count to ten and if you don't trip the baby, I'm gonna get all of you!" At that point I walked over to them and said, "If you touch my kids, I'm telling your moms." They stopped, but started back up again after a while, watching me the whole time and laying off when I gave them dirty looks. They were making me so upset, but I've never been in this situation before, so I didn't know if it would be an appropriate time to go over and talk to the moms. I had a feeling, based on their lack of interest in what they were doing, that they would blow it off and say, aw, they're just being boys.

And then there's more. As we were leaving, Abby and Carter stopped to say hello (durned social children) to two ladies sitting in a booth. One of the ladies asked me about their hearing aids and I told them all about it, and she proceeded to tell me that if I would read one particular passage of scripture over and over, and pray, God would heal my children. (I never asked her what the scripture was.) She said that she had brain damage, and she found this scripture and read it over and over again and prayed and she was miraculously healed. And so I told her that I felt that maybe the Lord would "heal" them by them getting cochlear implants one day, insinuating that maybe it wasn't the Lords will for them to be miraculouly healed. And she kept pressing the issue insisting that God could do more than that and heal them instantly if we would only have faith. *sigh* I just wanted to say, do you know how many times I prayed for the Lord to heal my children? TRUST. ME. Its not because I don't have the faith, or haven't prayed enough, or haven't read the scriptures enough. I know God has the ability to heal. I know it happens, and I truly believe in miracles. I even know that if He wanted to, He could genetically alter my children so that their hearing could be restored. But I also know that He has a plan for each one of us, and this is a trial that we were meant to have. I have accepted and embraced that fact, and my testimony and love for the Savior has grown through this trial. I almost wanted to tell her, "I don't WANT my kids to be healed," because I wouldn't change one single thing about my children. They are beautiful, AMAZING people, and they don't need to be fixed.

Certianly I'm not the only one that's had a weird experience at McDonalds. What's yours?

torture

Going to the audiologist alone with two kids fairly new to the whole hearing aid thing is NOT. FUN. AT. ALL. Abby hates when we take out her hearing aids, wires scare her, and she has yet to let us do any booth testing on her. She was seriously borderline fetal position nervous breakdown a few times. Carter is younger and was a little more cooperative, but he wasn't too keen on getting ear mold impressions, and he cried the whole time and for the rest of the visit. But can you blame him? Look how RED it turned his ears! Poor baby!

Anyway, we got them adjusted, got new ear mold impressions, and even got some good data on Carter in the booth, so I'm happy. My ears are still ringing and I've needed a few doses of Tums since then, but it was worth it. However, next time I'm taking someone with me.

Stay tuned for a later post about the insane things that happened to us at McDonalds afterwards. Here's a little hint: Lord of the Flies and Billy Graham.

"Are you sitting down?"

My sister Suzy asked me. It was November 19th of last year, my sister Missy's birthday, and I was on the phone with Suzy. When someone asks you that question, you know what they have to say can't be good. And it wasn't. "I'm with Mom at the doctor's office, and they did some tests and... she has lung cancer." The words shot through me and I immediately sat down. She continued on, explaining what the doctor had said, but I didn't hear any of it. My mind, like always, immediately went into overdrive, analyzing the past, present and future all at once. I've already lost my dad, I couldn't bear to think about... Finally she said, "Mandie, are you still there?" "I think I already knew it." I replied, and explained. Just a month ago I had had an IM conversation with Missy where I expressed my concern that the constant coughing she had could be something serious, like cancer. My mom has been a chronic cougher for as long as I can remember, but this past year it seemed to have gotten worse. She frequently visited the neighborhood doctor who tried to "fix" her with all sorts of allergy meds and such, but it didn't get better. Finally she decided to go to a pulminary specialist, and that's where she was diagnosed with cancer.

The doctor said the cultures were going to the lab for confirmation, but the mass inside her lung was pretty big and he was quite certain the diagnosis was grim. So a few days later they called Mom back and told her they needed her to come back in to get a better sample, because what they didn't culture enough of the mass. So they repeated the steps, and after the holiday they called her back and said they couldn't find cancer in what they had cultured. So he advised her to either a) do exploratory surgery or b) get a second opinion. She chose option b. But this time, all the wiser, she called a friend of hers who is a renowned radiologist at Harrist Methodist and he hooked her up with a good doctor. This new doctor was very thorough with his testing and discovered that the mass in her lungs wasn't cancer, it was a fungus. A fungus. He said it could have simply started by aspirating a piece of corn or something, and because foreign objects don't leave the lungs, it stayed there and, well, grew. My mom said she has been coughing like this since she was 11 years old. Could this fungus have started when she was 11? There's no way to tell.

So the doctor put her on an extremely strong antibiotic to kill the fungus, and inflated the portion of the lung that had collapsed from the trauma. We found out she was cancer free right before Christmas. What a great Christmas present.

Anyway, the doctor was afraid that she might have a syndrome called Wegeners, and he was also afraid that her lung would cave in again. Just a few days ago she went back for a follow up and found out that she does NOT have Wegeners, and her lung, for the most part, has stayed inflated. Her fungus is almost completely cleared up, her coughing has decreased dramatically, she's breathing better, and the best part of all... it's not cancer.

we have an appointment!

Our audiologist called today and said that Unitron would have everything up and running by Friday, so she scheduled an appointment for Monday to adjust Abby and Carter's hearing aids!

Yay!!!

I am so relieved that this is all over. Let's hope for no more drama!

Where have you been all my life?!

You better believe we're getting one of these! Plano ISD's audiologist gave it two thumbs up and says it really works. A life saver for anyone that has kids with ear issues.

http://www.earcheck.com/

progress. hopefully.

On Thursday I made valentine cookies, packaged them up in pretty boxes, and headed over to our ENT for a visit. I had been planning this for a few weeks, because I know if we show our appreciation to those medical professionals that care for our kids, they will be much more willing to go the extra mile for them, and they will WANT to help us. I don't want to be one of those parents that doctors dread. Call it brown nosing if you will, but it works. And considering our issues of late, we need all the help we can get.

So anyway, Abby gave the cookies to the audiologist and she was genuinely shocked. She was even more shocked when she learned that we drove all the way there just to give them a present (although I did have an alterior motive.) I asked her about the progress with the hearing aid manufacturer and she said something about waiting on a signature from someone that was sick last week... blah, blah blah. So I then waited for Dr. Bauer to get done with a patient and gave him the cookies and asked if I could talk to him for a minute. I briefly told him our situation and he politely defended the audiologist and said she was in the process of getting it done and I said, I know. But its been TWO MONTHS since their ABRs and they haven't had their hearing aids adjusted yet. He said, yes, two months is way too long and I'm sorry. He then told me he was going to make some calls and if I didn't hear from him by Monday (tomorrow) to give him a call.

So we'll see.

near tears

I am so frustrated right now. Abby and Carter both had ABR's done in mid-December and because of a drastic drop in hearing, they both need hearing aid adjustments. Our ENT told us that his audiologist on staff was getting the technology to adjust hearing aids and both he and the audiologist said it would be up and ready by the beginning of the year. Our audi said that she needed to get a hook ups and a contract from Unitron (their hearing aid manufacturer) and then she could start adjusting Abby and Carter. We came two weeks later for a follow up and the audi said that it might be a little big longer than she thought and so maybe we should go see our old Audi for one last adjustment and she would have it all ready for us in a week or so.

So I send the ABR results to our old audi (who is an hour away from us) and she called me and said that she REFUSED to adjust their hearing because of the drastic changes. She wanted to do futher testing, which means more time and money, and a delay in getting their adjustments.

So then I called the new Audi with our ENT and it took a WEEK of phone tag (which meant I was calling her almost every day and she never called back) for us to finally talk. (SO frustrating!!!) and I told her what was going on. She said she didn't understand why she wouldn't accept the changes in their hearing considering they have Pendred's and EVA. She also said that when she called the Hearing aid manufacturer they said they never received her contract and so she was going to have to re-submit it which might take another two weeks or so, but she was going to call Unitron and tell them the situation and hope they would rush it. She told me to stick with her and we would get this taken care of quickly. Well that was over two weeks ago. Haven't heard from her.

I am so unimpressed with the way BOTH of the audiologist have handled this, and even more frustrated that the audi we WANT to go to is being unprofessional by not returning phone calls and getting the gear for their hearing aids fast enough. Our ENT is one of the best in the state. You'd think he would have a more professional audi on staff. It makes me want to look for a new one all together, but our insurance doesn't have ANY other pediatric audiologists in the Cigna network, and if there are, they are hiding under different names or categories or something.

My kids desperately NEED their hearing aids adjusted and we can't get it done. WHY do medical professionals and insurance companies have to make it so difficut for us? I mean, Isn't enough that I have two kids with hearing loss?!

abby's room re-do

We thought it was time to sell Abby's old baby furniture and get her some grown-up stuff. I went in search of some good deals and re-did her room for $250!

Found this on Craigslist for $50. It had good bones, but definitely not my style. So we primed it, painted it and put new handles on it. I think its pretty classy! The handles and paint were a little pricey, so in all, I spent $80 on this dresser.

This was a totally serendipitous find at Salvation Army. I bought it for $30, paint was $10, so I spent a total of $40 on this rockin' bookshelf.

Because of the big window seat, the only kind of bed that will work in Abby's room is a daybed. I found this one at Garden Ridge on sale for $100 (normally $250!) The quilt and sham were $30 at Target.

sudden change in hearing

Since Monday, I have noticed a sudden change in the way Abby responds to me. I feel like I have to raise my voice all the time for her to hear me, (even with her aids on) and her speech has become more sloppy. I asked her teachers to be aware and they too noticed that she was slow to respond. She has had a runny nose all week, so I'm *hoping* that she's just a little stopped up. For most of us, when we get a cold and our ears stop up, sounds might seem fuzzy, and we might lose a small amount of hearing, but it doesn't affect our quality of life much. But apparantly for HOH people, a small amount of fluid in the ears can decrease their hearing dramatically.

I just did the LING 6 sounds with her, and she consistently responded correctly, so she might be okay. But if I still notice problems on Monday, its off to the ENT for us.

puney

Poor Abby isn't feeling very well. She fell asleep at 9:45 am on the chair holding a half-eaten sucker and her lipgloss and slept for almost three hours. (I moved her of course.) After she woke up she asked to take a bath, then she quietly played with some playdough for a while, and now she's chillin' in front of the tv. She's so sweet when she's sick.

picture this

You awake in the middle of the night to a faint moaning and get up to investigate. You meet a small trembling figure in the hallway and reach out in the darkness to touch its hair, only instead of softness, you feel something damp and sticky. You quickly turn on a light and gasp. Abby has thrown up the only thing she ate that evening; two dinner rolls, which in their regurgated form have formed marble sized chunks which Abby smeared all over her face. and shirt. and arms. and hair. and bed. Her hair is sticking stright up with a little help from some throw-up mousse, her face pale, her bottom lip trembling from the cold. And all I could do was laugh. Of course I felt sorry for Abby, but the picture was priceless. I guess you just had to be there.

Be glad you weren't.

sunshine

Is the best word to describe her.