Monday, November 28, 2011

Can you hear me now?

This is Mavery with her picture of the Floating Lights. Do YOU know what the Floating lights are? You would if you lived here and had watched Tangled exactly 52 times in the last week. Good thing it is one of my favorites. And if you have not seen it, I am sure you would enjoy it!

Mavery is doing better. Her emotions have been WAY up and then WAY down this weekend. For example. She asked me to curl her hair. She has alot of hair, but I started to curl. And curl. Till suddenly she started screaming, I want my hair straight! Ok stop curling. NO I want my hair CURLY! And on we went till I finally convinced her to watch Tangled, Again. We tried to go out on Black Friday. Because we are idiots. And desperate to leave the house. We thought just a short stroll to the Apple Store and dinner. Apple store was not so bad. She played computer games for awhile. Then it was meltdown time. And a 6 year old throwing herself on the floor who I can't pick up and straddle on my hip to carry out because of her surgery is not fun. I promise. We finally got her out and Mark was still hopeful for dinner. I was hopeful for Rapture. We compromised on Steak & Shake drive thru, which made Mavery happy. As well as ending the evening with... Tangled. ;-)  This is just how it goes each time for her. Drugs are GOOD in the hospital. Drugs are BAD when you come off of them.

Today was our meeting with the Ear Nose and Throat Doctor. They once again tested her hearing. And the audiologist once again said she suggested double hearing aides and was sure the doctor would agree. She then proceeded to tell us about getting the hearing aides, how they work etc.  Then we met with the doctor. First, I am not sure how many people have been in a waiting room that proclaims Jesus. This is the only place I have been, and believe me, I have seen MANY medical facilities. I am not talking about a cross on the wall. I am talking bibles and christian reading on the shelves. A doctor whose faith just pours from him when he invites you in. I adore him, he is so amazing.

He said there is no way he thinks Mavery needs hearing aides. (Say what?)  In his opinion, her hearing is heart related (interesting) and will not get worse. (Praise God!) He thinks it is not bad enough to warrant aides and that with the right speech therapy she will be just fine. I confirmed that the audiologist said AGAIN she needs aides. He just smiled and said, she does not. What she does need is a good ear cleaning once a year (yuck!) and he will re check her then, but no aides. She is fine.


It is as if the angels were singing. I sat there stunned and so really did not ask questions. I asked Mavery if she understood that she does not have to wear hearing aides and she was not happy. I mean come on, purple hearing aides she was going to name Papa Larry were pretty exciting in her head.

I asked Mark if we could spend the money we saved on a cruise instead.

That is a joke. We did not HAVE the money for hearing aides.  And now, we don't have to worry.

She is fine. WE are fine. And God is good.

Thursday, November 24, 2011


It was a long night, because of course when you sleep all day who needs to sleep at night?? Mavery was quite ready to go home this morning, as were we! The hospital was so quiet today, only a skeleton staff. Which means everything takes awhile. Had a chest xray, watched enchanted, again. Finally, we were free! Slept away the afternoon, turkey dinner was delivered and enjoyed. Grammy & Papa have the rest of the kids for the weekend so we can spoil ms mavery! Happy and thankful!

Wednesday, November 23, 2011

All is well!

Mavery is doing great! She slept the entire 6 hours after, praise the Lord! We were told we would have a room mate but came to a private room, thankful! She has been so sweet and calm this evening and we are now enjoying watching enchanted while she drinks a smoothie and enjoys some fruit. Her night nurse has been our same nurse every single hospital stay, and remembers Ms Mavery well! All the way back to our first visit 3 years ago when mavery paraded the halls in her cowgirl boot slippers, her purse and her bling! As much as we don't enjoy being in the hospital, we have used every chance we get to share our story, Maverys story. She has loved handing out treats we made to her nurses. We are so thankful God let us parent this sweet girl.

Update so far...

Mavery is done! We are waiting to see her but just talked to the surgeon. Great words to hear "we like you guys, but we don't want to see you for a long time, stay away! " First time for a good report since we started on this journey of the heart 3 years ago. They ballooned the right pulmonary artery, and placed 2 more stents in the right. Eventually these will need dilated as she grows, but prayerfully, not for a long time. And the valve is leaky, but unless we see signs(over tired) they will wait till she is older to mess with it. We are feeling very very thankful. But now the fun begins. 5-6 hours of lying flat! I hope they can keep her drugged. Or me drugged, either way. :-)

Tuesday, November 22, 2011

Update time for tomorrow

Cath lab called tonight and moved Mavery up to arrive at 645 am! This is great news! Means we can stay in cath lab(on the good drugs!) till she can get up. They said they called in an extra anesthesiologist. The lady who called has been with us each procedure, she knows our girl well!

Cardiac cath Wednesday

Testing to see if I can post from my phone. Tomorrow we are supposed to be at Children's Hospital at 10am for mavery's cath. I'm guessing it will be noon or later before they actually start. Yes we will be there overnight. Yes we will prayerfully be home on Thanksgiving. She has been acting more tired lately so we are anxious to get this over. And as I made the appointment and asked for an earlier time, I was told before her is a heart transplant. So I am thankful that we are not there, that my daughter "just needs" a heart cath. Thanks for praying!

Thursday, November 17, 2011

Mavery's Medical Madness

I have some posts about ready. As it IS birthday season here. But I wanted to give an update on Mavery and her many doctor appointments recently.

  • We started with cavities. Her first. Besides the fact that I am wondering if my dentist just ENJOYS getting $ from us, I just can't imagine because she is a good "brusher".  I think we will get a 2nd opinion on this one. 
  • Hearing. Since Mavery started school, they tested her for speech and she flunked the test. Or passed, however you want to look at it. It is no surprise to us. She talks well, she learned English at the speed of lightening. BUT there are many sounds she struggles with. So they set up all our appointments to get her speech therapy while in school. They went ahead and did a hearing test, which she failed. Thinking MAYBE it was just her having waxy ears, they suggested we go on to an audiologist.
  • She failed that too. SO, the suggestion is that she gets double hearing aides. We see the doctor later this month to discuss what all of this means. It is the higher sounds she is missing. It was almost as if an light bulb went off. It COULD explain SO much of her behavior.  Which brings out a whole lot of guilt. In me. I have lots more to say on this, hopefully soon. 
  • Heart check up was this week. She did  AMAZING, oh when I remember back on those early echo's, they were SO hard and now she just cooperates.  They scanned FOREVER which is never a good sign. Her pressures in the arteries are up. They SHOULD be 20, they were 40 lat check and now up to 60. We are seeing signs of this, she is more tired than usual. Which is scary now that we know. So, they will be doing a cath to go in and dilate both arteries. Which means they go in the left and right side. We have done this, what 4 or 5 times now? But still not something you want for your child. She will be under and we will be there overnight. Mavery does not do well with sedation so prayerfully this will go smoothly.
As we have had each appointment, we have been adding up the costs of all we will have to pay out of pocket. It is not good.  It is more than not good.  Especially since we have been trying SO hard to pay off our debt (which surprisingly enough is all Mavery! ;-)  ) We have been in a class of Dave Ramsey, and trying, REALLY trying.

But today I am reminded of the BLESSING we have that Mavery is HERE! She is ours, and she is ALIVE! IF we had not adopted her, the chances that she would have had more done to fix her heart were slim. In fact, the chances that they would have even caught that aneurysm, well I have a feeling there is one way they would have known it was there. Not a good way either. 

We appreciate your prayers as we finish out this year with lots of doctors.  So thankful for a loving Father who cared so much for Mavery He allowed us to parent her.  I will update as we get a date on that heart cath.