Happy New Year!

2013 was a crazy rollercoaster ride for us. We started off the year with Madison in the hospital, and me quitting my job to stay home with her due to her many issues going on. Her sleep apnea has gotten much better, but she started having seizures this year. We have celebrated many milestones & look forward to seeing many more. We celebrated birthdays, anniversaries, weddings, new babies, and many more occasions with family & friends. We joined a new church family at First Baptist Portland & were welcomed with open arms. We are so happy to have found a new church family together & have truly been blessed by being members there.

With that being said, the ups this year have outweighed the downs. We are very blessed & are looking forward to 2014 and what this year will hold for us. Here are some of my favorite pictures from 2013:

 



Valentine's Day

Easter

Rush's Baby Shower (Molly, Jess, Kat, & Me)

Mother's Day

Madison's Baby Dedication at Portland First Baptist

Meeting Rush

Madison's 1st Sucker

Madison's 1st Birthday

Madison Swimming

Jessica's Bridal Shower (Rebekah, Kat, Madison, Jess, Me, Molly, & Kayla)

Jessica's Bachelorette Party

Greenbrier Football Games

Flower Girl in Jessica & Jeremy's Wedding

Madison in her Glasses

Zoo Trip

 

No More Helmet!!

Gatlinburg Aquarium

Madison, Emma, & Blake at Thanksgiving

Christmas

New Year's Eve

 

 

I have a few resoluations for 2014...

 

1) Read my devotion book every day. I'm reading Jesus Calling:  Enjoying Peace in His Presence by Sarah Young.

 

2) Lose weight - I want to lose 20 pounds by June & then another 10 pounds the second half of the year. Jake & I are starting T25 1/6. I'm also going to try to run 3 times a week & keep up with my calories. Right now I'm going to try to eat under 1500 calories a day. I know 30 pounds may not be 100% realistic (it would put me under my high school weight), but aim high, right?

 

3) Research the process of writing a children's book. I love to write & I think that I could write a children's book. I want to gain knowledge of how to get a book published & start brainstorming possible ideas. Then we'll see where it may go. (If anyone has any information they want to sure, I welcome it!)

 

I hope you all have a Happy New Year, and I'm looking forward to what 2014 holds! 



(Amazing!) Sleep Study Follow Up

We went today to see Madison's ENT & Pulmonologist to discuss her sleep study results in further detail & next steps.

They were so happy with how the sleep study went. She had such an amazing improvement (they said the best they had ever seen)!! All of the many prayers for Madison definitely were heard & answered! Unless we see she is having issues again, she won't even have to have another sleep study done. They also think that as long as she does well through the winter, we will be done with the oxygen monitor in the Spring (she hasn't had to have her oxygen in ALMOST 4 WEEKS)!!

Just a side note:  thinking about not having her hooked up to the oxygen monitor is almost enough to send me into a panic attack. Prayers would be appreciated for this adjustment as we get used to her actually sleeping & breathing well.

She will be having surgery soon (date pending), but nothing else needs to be done to help her sleeping at this point. The next time they put her under, here is what she is having done...
-Tongue clipped (she is tongue tied)
-Sedated hearing test & cleaning out her ear tubes (they also will replace the tubes if needed because they keep getting clogged up)
-Looking at her vocal chords / airway again with a camera to make sure they haven't missed anything
-Getting her tear duct in her eye unclogged

She will likely be under for 1-2 hours, but shouldn't have to stay in the hospital if she does really well during surgery / coming out of sedation. (If she has any issues during surgery with her breathing or airway, she could stay overnight at least).

We are so thrilled with the great news we have received about the sleep study & are so thankful for God's healing hand over Madison!

Happy Thanksgiving!

I think that you should be thankful every day, but I do love Thanksgiving! I love getting to spend time with family, eat, and just enjoy being together. There are so many things that I am thankful for... this year has been full of ups & downs, but God has been so very present through it all.

First, I am thankful for my salvation; for being loved by a forgiving & merciful God. There were times this year that I questioned why things were happening, but His presence was always near. His love & grace are more than I deserve, but I'm so thankful He loves me unconditionally.

I'm also thankful for my wonderful husband, Jake. He works hard so I can stay home with Madison. I don't have 3 meals cooked a day, and the house isn't always clean, but he never complains. There are times after being home with Madi all day I need some "me" time. Even though he has worked all day & is tired too, I never hear him complain when I take time to go to the gym or get out of the house. He is such an amazing father to Madison, and she loves her "dada" so much!

One of my greatest blessings is Madison... she has brought so much joy to our lives. I love watching her learn & discover new things. Just in a week or two she has learned to climb on furniture (and get down), open doors that we have shut, stand up by herself in the middle of the floor (which it seems like we have been working on forever), and say "Whoa" (which cracks me up, especially when she pulls a toy out or sees something she likes). I love going to get her up in the mornings from her crib. I'll turn the light on & she will usually sit up really quick with the biggest grin on her face. She is definitely a sweet, loving child in the mornings.

I'm also so thankful for the improvements we have seen in her health the past year. We have had some new bumps in the road come up (like her seizures), but overall she is doing so much better! She hasn't had to sleep with her oxygen on in over 2 weeks for the first time since January! She has been on her seizure medicine for 4 weeks now & she hasn't had any seizures yet! She also has been released from wearing her helmet, and is doing so much better with her eating! Prayers have definitely been answered, and we appreciate everyone who has prayed for Madison & for us.

I'm also so very thankful for our families. They have been our rock when times were hard & our biggest cheerleaders during the good times. I'm so glad that Jake & I have good relationships with our parents & siblings. I so look forward to anytime we get to spend with family!

My mom & dad are two of my best friends. I talk to them every single day & they are some of the first people I go to for advice. I'm also thankful that I still have a grandparent alive. I cherish the time I get to spend with my Gigi. She is definitely the rock of our family. She is the most caring & selfless person I have ever met. She loves to cook for our family & there are times she hasn't eaten her food yet before most of us are done because she's so busy making sure everyone else has what they need.

There are so many other things that I'm thankful for... friends, old & new church families, Madison's doctors & therapists, a warm roof over my head, plenty of food to eat, etc. All I can say is even when times are rough, you always have things to be thankful for. We have all been blessed far more than we deserve.

Happy Thanksgiving!

Great News!

Madison had her 2nd sleep study Sunday night. I thought that her apnea had gotten some better since she had her tonsils & adenoids out, but I wasn't sure how much. I was nervous how the results would turn out, especially since she had a pretty high fever when we did the study.

We are meeting with her ENT & pulmonologist December 11th to go over the results of the study & next steps... but I heard from her pulmonologist today with some preliminary results.

He was really pleased with how much better things looked! Last time, her apnea index (obstructive and central apnea combined) was 63%. On the recent study this number dropped to 1.9%. That is a HUGE improvement!!! She still had some episodes (we didn't get into the number today), but it is so much improved that she doesn't have to be on her oxygen at night unless she needs it!

This doesn't mean that she won't have some type of surgery to improve this number even more, but it should be minor. I was very worried that if the apnea had not improved, she could possibly be getting a trach put in. Thankfully this doesn't seem to even be on the drawing board anymore!!

I am so thankful for all the many prayers for Madison. We were expecting improvement but not to this degree. God continues to have His hand on Madison & we are so grateful!

Spooky Start to Halloween... Part 2

After my blog post yesterday, maybe 15 minutes passed by before Madison had another seizure (around 1:15pm). It lasted about a minute with her oxygen dropping & her right hand twitching this time. I called her pediatrician & made an appointment to take her to get checked out.

Jake came home & met me because I was terrified to drive by myself down to Goodlettsville in case she had another seizure in the car. I grabbed her Halloween costume (she was going to be Minnie Mouse) since we were supposed to go eat at my Gigi's that night for mine & Jake's birthdays. I wasn't sure if we'd get to go or not, but wanted to take everything just in case so we didn't have to drive all the way back home.

All her vitals were good at the pediatrician, and she was fine when Dr. White examined her. They called in a prescription for her everyday seizure medicine so we could pick it up. We decided to get it at the Walgreens in Springfield instead of the one in Goodlettsville (since we figured it would give the pharmacy time to get the medicine ready).

Madison fell asleep in the car right before we got into Springfield. We got to the first main light in Springfield, and she opened her eyes and looked at me. She had a weird look about her, so I grabbed her oxygen tank. All the sudden her eyes rolled back in her head & she started turning blue. It seemed like it took forever to get the tank to work & the oxygen put in her nose. I told Jake to turn left & go to Northcrest. Madison wasn't breathing & her whole face was turning purple. The oxygen was cranked up all the way, but since she wasn't breathing it wasn't doing any good.

Jake was having to drive almost the whole way to Northcrest in the turning lane, and I got Madison out of her car seat to try to turn her on her side. I could see her tongue was blocking her mouth / airway. I tried to pull down on her mouth to open the airway & she was so rigid I couldn't even budge her chin down. It probably took 2 minutes to get to the hospital. I seriously thought she wasn't going to make it because I couldn't get her to breathe. I jumped out of the truck & ran in the ER. As I was yelling that she wasn't breathing & we needed someone NOW - Madison started breathing some & her color was improving. Out of all the things that have happened so far, I think that was the scariest. I just felt helpless & had no idea what I could do. If this happens again I will try to do CPR, but I couldn't do it in the truck.

They made sure she was stable at Northcrest & started her seizure medicine, then she was transported to Vanderbilt. They did a chest x-ray & CT scan (which were normal). We got up to a room late last night & they finished hooking up the EEG about 1:30am. It ran until lunchtime today, and it also came back normal. She is now on seizure medicine twice a day. We are just praying that this is the right medicine for her & the right dosage. I don't know if I can take another day like yesterday. But if it happens, we will just trust in God & do all we can to help her.

I'm so thankful we happened to choose to go to Springfield instead of home. I know God had His hand over Madison & I'm so thankful that she is ok. We love this sweet little angel so much (even though she's going to give me a heart attack before I'm 30).

Spooky Start to Halloween

We had a spooky start to kick off Halloween last night... Madison had her 3rd "episode."

We always lay her down for bed & she puts herself to sleep. Then after she falls asleep we put her oxygen monitor & oxygen on. (If we try to do it when she's awake she just pulls it off & has even pulled the wires out of the pulsox before).

A few minutes after we laid her down, we heard a really weird noise. Almost sounded like she coughed, but she hasn't ever sounded like that before. So I went and checked on her... she had thrown up everywhere in her crib & was blue again with her eyes rolled back. Jake & I put her oxygen on her & cranked it up. Then when we got her monitor on her, her oxygen level was in the 60s / 70s. It took a minute or two to get her levels back to the 90's. We took her helmet off & she didn't have fever, but her hair was soaking wet.

Jake got her crib cleaned up while I gave her a bath. She just cried the whole time. :( Then I rocked her & she fell right asleep. After that she was ok during the night & woke up fine this morning.

I called her pediatrician & neurologist this morning to let them know what happened. They think that she is probably having seizures, but don't know that for certain. However, they are going to go ahead and start her today on an everyday seizure medicine. I hope that it does help, but I'm nervous about the possible side-effects. (mood changes, agitation, nausea, etc.)

Madison has another EEG scheduled for November 18th, just hoping they can figure out what's going on.

I'm glad she's feeling ok right now & can enjoy Halloween!!

Wonderfully Made

Madison had a genetics appointment today. (Just an update on what has been going on - no new information for us concerning her genetic abnormality. There still is no one they can find that has the exact duplication she does.) I was thinking about the appointment last night & trying to remember what doctors we had seen, what all had gone on in the past year, etc. I was flipping through the channels, and on TLC there was a show called "My 40 Year Old Child."

Of course I had to stop & see what it was about.

There was a man in Australia who was 40 years old, but he looked like he was 10. There was also a 6 year old in Montana that looked like & still had the mindset of a newborn. She was 10 pounds, still taking a bottle, etc. It was mind-blowing. There was a scientist in Florida who was trying to figure out what was causing their very rare condition by studying their DNA.

The scientist made a comment about how if just one thing in a person's DNA is off, it can cause severe conditions like these two people had.

We are all wonderfully & fearfully made by God. I don't understand how anyone can doubt that, especially when thinking about things like DNA. The way a baby is developed and formed is so specific, and if one thing is off you can get complications (like a genetic abnormality, or a syndrome, etc.) Even when someone's DNA isn't exactly perfect by the standards of science, they are perfect in God's eyes and are still made in His image.

God's hand is so evident in the world around us, and I love moments like I had last night when it just seems so clear and so evident. Those are the times I try to remember if I ever have doubts that creep in or questions that I can't seem to find an answer for.