Psalm 23

The Lord is my Shepherd; I shall not want.
He makes me to lie down in green pastures; He leads me beside the still waters.
He restores my soul; He leads me in the paths of righteousness for His name's sake.
Yea, though I walk through the valley of the shadow of death, I will fear no evil; for You are with me;  Your rod and Your staff, they comfort me.
You prepare a table before me in the presence of my enemies; You annoint my head with oil; my cup runs over.
Surely goodness and mercy shall follow me all the days of my life; and I will dwell in the house of the Lord forever.
Psalm 23

How amazing is it to read God's Word & to know you completely understand those aspects of God described in it? Not because you have heard it or read it, but because you have lived it.

Psalm 23 was the scripture we studied in Sunday School today. It is such an amazing, powerful Psalm. We read it several times in class this morning, and the whole class I was on the verge of tears. Finally, with my heart beating in my chest so hard I thought Jake could feel it with his arm around me, I spoke up. Of course I was about to speak about our situation with Madison & what we have gone through. I immediately start to tear up as I'm talking & get so overwhelmed with emotion I can't talk. It's one of those ugly face cries too... You know what I'm talking about. You want to speak, but when you try you can't get the words out. Full on ugly cry. Not a cry because I'm upset, angry, or sad. A cry because I was so overwhelmed by how awesome God - my Comforter, my Strength, the Ultimate Healer, Provider, Savior - is, and how He has total control.

This morning I woke up earlier then usual. I laid in the dark & just listened to the sweet sound of Madison breathing over the baby monitor. I laid there and just thanked God for the peace He has given me, and that I don't have to go in her room several times a night to watch her breathe. He is in control. What a burden has been lifted off my shoulders. It's amazing how when you let go & trust Him what can happen. Are things perfect? No. Do we still have struggles? All the time. However, the valleys and the dark times are so much more bearable when you have someone bearing the burden not only for you, but with you.

I have learned so much about myself in the 2 and a half years Madison has been on this earth. More importantly, I have learned so much about God. Living through these valleys & watching my daughter face the shadow of death had brought me so much closer to Him.

Thank you God for being with me through the dark times & the happy times. My circumstances change, and my emotions change during those circumstances, but You remain constant, steadfast, and ever-present. You are good all the time, and I thank you for lessons learned & the growth in my relationship with you. Amen.

Christmas Traditions

I will be the first to admit it... I'm feeling a little more like the Grinch right now concerning Christmas. Im not really sure why either. Maybe it's seeing Christmas & shopping commercials since early November... Maybe it's seeing how greedy & materialistic Christmas has gotten... We haven't even gotten our Christmas decorations up. The task of putting up a tree & decorations seems nearly impossible with a two-year old who is into everything & climbing on everything she can. I'm even debating whether to decorate our tree, and wondering how I can keep Madison from pulling it over on her.

With that being said, I really do love Christmas. I have great memories of Christmas & love that it's a day to celebrate the birth of Jesus. One of the things I remember about Christmas growing up were the plays we did at church. They were awesome (from what I renember 😃), and there were always some comical mishaps (like my brother riding on a plastic camel when he was a toddler). I also remember getting to open one present on Christmas Eve (pajamas) & reading the Christmas story out of the Bible (both which Jake & I have continued with Madison). My brothers & I would get up super early to take a sneak peek at what "Santa" brought us, trying to sneak across the squeaky spot in the wood floor so mom & dad wouldn't hear us. We would open presents Christmas morning, then go to Gigi's for breakfast. (Which we still do... Adult cousins, I think we should wear our PJs this year like we used to 😳)! That afternoon we would go to my Granny's for lunch.

I know Madison is still too little to remember Christmas, but I want it to be a magical time of year for her like it was for me. As she grows up I want her to look back on Christmas with fond memories. I want her to know the real reason for the season, and the joy that comes from giving to others. (Not just presents, but helping those in need, etc.) I can give my family the gift of joy & peace at Christmas, or I can ruin what should be one of the happiest times of the year. I resolve this year to have a fun, peaceful, joyful, Christ-filled season.

The Christnas traditions we do right now are to read the Christmas story from the Bible (Luke), and Madison opens one gift Christmas Eve (new Christmas PJs & a Christmas book). Some of the traditions I want to start this year are having a birthday cake for Jesus, going to a Christmas parade, going to Christmas plays, baking treats for those we want to show how much we appreciate & love them, watch a Christmas movie (or several), go to dinner & look at lights. Next year I would like to do an Advent calendar with Madison as well.

What are your Christmas traditions?

Goodbye Oxygen!

This past Friday was a bittersweet day for me. The supply company came & picked up Madison's oxygen & supplies! We have been waiting for them to come get everything for a couple of months now, but it wasn't actually real until the guy who came to pick everything up loaded it into his truck.

I am so happy that she doesn't need it anymore & that it's out of her room... But as much as I was ready to get it out of the house, just having it there made me feel better if something happened where she needed it.

I finally have gotten to the point where I don't have to get up and check on her & physically watch her to make sure she's breathing. However, I do still wake up several times a night & listen to the baby monitor beside me to make sure I can hear her and she's ok. I know that everyone worries about their children, but until you have gone through a traumatic experience with your child, I don't know how much you can relate to what I'm about to say. (Without thinking I sound a little crazy). She has come so incredibly far, but I still have dreams that I go in to find her blue & not breathing. And sometimes I can't get her to wake up or start breathing. When those dreams do happen (and it's less frequently now), I do have to get up & give her a kiss. Going in to find your child not breathing, blue & unresponsive not just once, not twice, but 5 times is something I never want to go through again. Only through the grace of God & trusting in Him was I able to go through it before.

Madison (and all children) are a gift from God. They belong to Him, and He has entrusted Madison to Jake & I. We have endured several hard seasons with her, but we are in a good season right now. I'm so thankful & so glad to say goodbye to the oxygen. God is good all the time!

Halloween

I can't believe it has been almost a month and a half since my last update! My world has been a little (ok, a lot) hectic since the beginning of October. Things are starting to calm down a little bit, but with the Holidays quickly approaching that won't last long!

First, it's been over a year since Madison's last seizure. Her medicine she's on is working right now & that is such a praise. I pray it continues to work, because we know from her last EEG she would likely be having seizures if not on her medicine... And that is not something I ever want to have to see again. Last Halloween was actually the date of her last seizure(s), and we were in the hospital with her during that time. This Halloween was special to us because it was actually her first official Halloween she got to get out & actually go trick-or-treating (even though we just went to families' houses). What would have been her first Halloween she was sick & running fever so we weren't able to get her out, and then last Halloween, as I said, we were in the hospital with her. 

She had a great time. She liked seeing everyone & she loves being scared! I would hide, jump out & scare her, and she would just laugh & laugh! I love hearing that laugh she does when she thinks something is hilarious & it's a deep belly laugh. We call it her "evil laugh." Jake said she had a "Halloween Christmas" from all the goody bags & treats she got. She is so loved & I'm so thankful for how close our families are. She was supposed to be Minnie Mouse. She wouldn't wear her ears, but she was still pretty cute! 😊🎃

Good Reports

Madi had pulmonology & ENT appointments today. We had great reports from both doctors! Pulmonology said she looked great & her lungs sounded good. The medical company should be calling us to pick up her oxygen machine & monitor any day now. We don't have to do a repeat sleep study unless we think she is having issues, and we don't have to go back to the pulmonologist unless an issue comes up or she has breathing issues. Definitely great to mark one doctor off the list (even though we really liked her doctor!)

We saw her ENT next, and her ears & throat both looked good. He doesn't forsee anything needing to be done surgically, we just have to watch the dimple she has on her nose for drainage/infection. On a sad note though, her ENT is leaving to go to Atlanta in February. He has been amazing with Madi & has been with us since she was in the NICU. He has also been in all her surgeries. We are sad to see him go!

I have said this before, but it is so heartbreaking sometimes when you go to the Vandy Children's a Hospital. Madison has come a long way & we have definitely had some scares... But nothing like some of these parents & children have to go through. There was a little boy today who came in with a GI tube & he had a trachea tube/oxygen, and it looked like he was missing a leg. Who am I to feel sorry at times for Madison & what she's dealing with (and what we as parents deal with)? She is growing & learning & improving every day. I worry about kids making fun of her for her glasses & not talking/walking well - she is a blessing & is made just the way God wants her. What we have had to deal with could be so much worse. Sometimes it is really good to get perspective & a reality check.

Gigi's 75th Birthday

At the beginning of September, we had a surprise 75th birthday lunch for my Gigi. We ate at Chocolate Covered Strawberry with almost 20 women total who were there to celebrate her. I don't know the last time (if ever) that Gigi had a birthday party just about her - let alone a surprise party! She was so surprised & so appreciative... and if anyone deserves a special day it is most certainly her!

My cousin came up with the idea to do a timeline of Gigi's life with pictures below it (picture below). It was so awesome to see my Gigi's life laid out that way. I always think of her as my grandmother... But she was so much more before that part of her life happened. Each person also had a "Gigi-ism" that we went around and read. Gigi's favorite book of the Bible is Proverbs, so they were taken from Proverbs verses that reminded us of things Gigi says or that reminded us of her.

My Gigi, Delores Williams, is my only grandparent still living. I want to cherish my time with her & learn from her because she is one amazing woman. My family is very tight-knit & close... I have never seen another family that has a bond like ours, and that is because of her. She is the most selfless & giving person I know. She puts her family above herself and loves unconditionally. She is the best cook I know & she loves to cook for her family and have us all over to eat. She has been one of my biggest cheerleaders & advocates. She has been at every ballgame, piano recital, school event, church event, and family event possible. I love her so very much & am so blessed to have her as my grandmother.

Madison starts WEE! (Weekday Early Education)

Madison started WEE this week at our church, Portland First Baptist. It's on Tuesdays & Thursdays from 9am-2pm. She is in Mrs. Gina's class with 5 other kids. I think she had a good week! Here are her first day pictures.

She did really good the first day. She walked right in & started playing. I don't think she even noticed when I left! I heard she liked playing in the gym - anything that involves running around she loves. :) She also took a nap, which I was worried about. Here lately I can't get her to lay down until later in the afternoon, so I'm glad she has cooperated with nap time this week.

Yesterday there were more people in her classroom when we walked in & she seemed more unsure. She just wanted to stand and was looking around. She wasn't crying when I left, but I think she cried for a little bit after that. She made a craft, played in the gym, and did music & Spanish I think!

I think WEE is going to be really good for her, especially being around other kids. I'm hoping it will help her speech & her personal space issue. I kept waiting to get a call this week that she had hit someone or was being mean. It's almost like she feels threatened when kids her size get really close to her & since she isn't talking really well she just hits at them to get her space back.

We are working on names, and last night she tried to say Lawson, JJ, and Mrs. Gina! :)

Here is a picture of her on the 2nd day & her craft she brought home.

Busy people get more things done

Wow - the last few weeks have been crazy busy!! On top of all of Madison's current therapies (PT, speech, and developmental), she is starting OT Friday. She had her evaluation a couple of Friday's ago, and they want to work with her. She still has some sensory issues, needs to improve on her hand strength, and the OT also thinks she has some motor delay.

She is also starting Mother's Day out today! I hope she does well (and is nice to the other kids!!) I will post later this week with how it's going.

She had an urology appointment yesterday to talk about whether she needs surgery to correct her kidney reflux since it has increased from a grade 2 to a 3. They don't want to do surgery right now, but if she gets a UTI or bladder/kidney infection in the next 6 months they will want to do it. (Since she just has one kidney, infections can cause scarring which would not be good). So that was good news!

She also saw her neurologist a few weeks ago, and he wants to do an EEG in a couple of months, and if it's normal (which all of her previous ones have been even after having the seizures), he wants to talk about trying to wean her off her seizure medicine. This of course makes me extremely anxious... but God is in control whatever may happen. (By the way, GHS plays Springfield Friday night & that night last year is when she had her 1st super scary seizure & ambulance ride).

On another good note - she has been off of her acid reflux medicine for about a week now - yay!! One medicine down, 2 to go!

My personal schedule has also increased dramatically, but I don't know how to not be busy, so I don't mind! Between Madison & everything going on with her, church activities/playing keyboard, Mary Kay, and high school volleyball in full swing I'm on the go A LOT! Oh and the last 2 nights Madi has decided she doesn't require much sleep. Grrrr... I do!!! Last night she kept getting out of her bed & we kept putting her back in it for over 2 hours. Finally I just shut her door where she couldn't open it, and she laid down in front of her door & went to sleep. It made me feel bad but whatever works!!

2 words together... 3 syllables... One happy mom!

Many of you know that Madison has been in speech therapy for over a year now. While she has made progress, I feel like she should be farther along than she is. Her speech therapist said she is making slow, steady progress. Better than nothing, right?

Well the past couple of weeks she has been doing so good! If you prompt her to say something, she usually at least tries - even though a lot of times the sounds aren't necessarily the same. She really has been saying more on her own, and that makes me so happy! She also does some signs (like for more, all done, open, I want, please, thank you, eat, etc.) The other day she said "I want IPad please!" Even though she was asking for the iPad, she said I want together & then IPad please together. She has also been asking for it unprompted now.

Tonight we were looking at a book & she tried to say butterfly. It didn't sound exactly like it should, but she said all 3 syllables together! Yay!

She's also trying to count & say her abc's! She especially loves saying five, I. O, and Y.

I know to a lot of people this may not seem like much, but Madison's expressive communication has been (and is) really behind. So even the small victories are so exciting! And I love seeing how proud she is when she knows she has done something new!

Doctor Appointment Updates

Madison has had several doctors' appointments in the last couple of weeks, so I wanted to post an update on where we are at now.


She saw her orthopedic doctor last week as a 6 month follow-up. We have had concerns about possible scoliosis with her as well as part of her ribs sticking out more on one side than the other on her chest. Her chest looks a lot better, but I still can see where it isn't symmetrical. The doctor said he expects as she gets bigger & grows that it will become less noticeable. If it doesn't, however, we could reach out to a general surgeon to get it evaluated. Her back x-rays looked better, and he didn't see any signs of scoliosis in the spine, so that is good. However, she still has some rounding in her back that is in her muscles, so it makes her back look curved. We are working on getting more flexibility in her back & legs in physical therapy, so hopefully this will continue to improve. The orthopedic doctor did release her though, so that's one doctor down!


Today we had several appointments at Vanderbilt. She had a kidney ultrasound & VCUG (kidney reflux test) done this morning first. She did ok in the ultrasound once we got an Iphone out, but she was not having it in the VCUG test. Bless her heart, though, I can't blame her! For the VCUG test, she had to lay down & they got x-ray pictures of her using the bathroom. They had to put a catheter in, fill her bladder up with liquid/dye, and then wait for her to pee. I was about to cry watching her - I hated it! (and of course we had to help hold her down, so that makes it worse). For those that don't know, they were doing the VCUG test because Madison has kidney reflux. So when she uses the bathroom, some of the urine goes back up into her kidney. This increases her risk of getting a UTI / bladder / kidney infection which we want to avoid at all costs because she just has one kidney. So we want to take the best care of that kidney that we can. She is on a low-dose daily antibiotic, and that has seemed to work so far. However, if she were to get infections, it could cause scarring on her kidney (which could lead to problems in kidney function as well as high blood pressure).


The reflux test showed that her grade of reflux has worsened from a 2 to a 3 (on a scale of 1-5). Typically, they see children start to grow out of this, but so far Madi's has gotten a little worse. So they are referring us to go see a urologist to get their opinion on if her kidney is protected on the antibiotic she's on, or if we need to look into the option of her having surgery to correct the reflux. So we are waiting now to get in to see urology.


She also has a GI (gastroenterology) appointment today, and it went fine. They are just monitoring how she's doing on her acid reflux medicine. There's a good chance she's grown out of her acid reflux by now, but because she has had so many airway issues & has a narrow airway, they want to protect it. So they will either start weaning her off the medicine soon to see how she does, or reevaluate in 6 months to see if she still needs the medicine.


Thanks for all the thoughts & prayers today :)

Madison Turns 2!

Today is Madison Claire's 2nd birthday! I can't believe I have a 2 year old! She is a beautiful, loving, silly, smart, stubborn little girl. We have definitely hit the "terrible 2's," and even though there are some days that are frustrating, it's amazing to watch her learn new things & grow to be more independent. Before I know it, she'll be heading off to Kindergarten!

Happy girl waking up on her birthday! 

Eating cake with Mrs. Mary at speech

Madison eating a sucker at her party

Jake, Madison, & Me at her party

Madison with her birthday balloons from Jeremy & Jessica

Madison has had a busy week! Sunday was Father's Day, so we celebrated with Jake's family & my family. Madison's birthday party was Monday evening, and she had her 2 year checkup Tuesday. Today, she has speech & PT and will get to go to church and play with her friends!

Madison's favorite show is Mickey Mouse Clubhouse, and she loves Mickey & Minnie. So the theme of her party was Minnie Mouse. We had her favorite foods & it all tied in with the theme. We had Hot Diggity Dogs (hot dogs), Mickey's Macaroni (mac & cheese), Pluto's Party Beans (baked beans), Goofy's Green Beans, Minnie's Fruit Bows (strawberries & blueberries in the shape of a bow), and Toodle's Treats (cake & ice cream, Reeses, and suckers). We also had Daisy's Drinks & Handy Helpers (utensils, napkins, plates).

Minnie's Fruit Bows

Handy Helpers

Daisy's Drinks

Pluto's Party Beans & Goofy's Green Beans

Mickey's Macaroni

Hot Diggity Dogs

Toodle's Treats

I absolutely loved her cake! It was so cute!

We ate supper, the kids got to go play outside, and then we opened gifts. (I say "we," it was really me opening gifts... Madison was too busy running around haha). She got some things for our beach trip, some clothes, a basketball goal, a water table, and lots of other things!









Yesterday, at Madison's 2 year checkup, Dr. White thought she looked really great! She was so happy with how she has progressed. She is 30 lbs (88%) and 36 inches tall (94%). We still have some issues that hopefully will improve or we can fix (like the speech, her walk / scoliosis, her open ductus in her heart, her kidney reflux, etc.), but she is doing so much better than she was this time last year. She's been off her oxygen for a while now, and we haven't had her monitored when she sleeps for a couple of months now (and we're all able to sleep through the night!) We did add seizures into the mix this year, but since she's been on her seizure medicine, she hasn't had another one. (Knock on wood!) She's walking & trying to communicate more (she doesn't have many words you can understand, but she can make about 20 animal noises if you ask her). :)




I thank God every day for this sweet & sassy little girl, and for the improvements she has had. It's crazy to look back on pictures from when she was born until now, and I know each year it will be amazing to look back on. Daddy & I both love you so much, Madison!

Toddler Bed Transition

Last night was Madison's first night in her toddler bed. We just converted the front of her crib where it has a small rail & the rest is open. She liked getting up in her bed, but keeping her in there until she went to sleep was another story. Jake & I alternated laying with her for over an hour. Finally, I laid her back down & shut the door. She got up & tried to open the door, but I held it shut. (Feeling awful the whole time, but she never cried).  After a few minutes I heard her go lay back down. She stayed in there until about 4:30 this morning!

I heard her in the living room, so got up to get her. She was just standing by the recliner looking all pitiful & holding her blanket. I went to lay her back down & saw she had shut the door behind her when she got up. (Smart little girl!) I laid down with her for a minute, and then got up and shut the door again. She stayed in there until a Jake went and got her a few minutes ago. She never fell back asleep though. So we have all been up since 4:30... Today may be a long day!

PT Evaluation - maybe I will laugh about this later??

So I wanted to share how Madison's Physical Therapy evaluation went today. If I could sum it up in one word it would be... disaster.

Madison rarely throws full-blown fits, but for almost the entire hour she threw a fit anytime the PT tried to evaluate her or work with her, or anytime she was having to do something she didn't want to. The PT was able to do some evaluations, and Madison does need PT. We will likely start next week in addition to speech therapy.

To top off the appointment, here's the icing on the cake. We took Madi's diaper off so the PT could check her hips. Well Madison scoots away to a corner where a small bench is, squats on it, and pees... In the floor!!! I was mortified! I guess though that since her diaper was off she figured she was supposed to go to the bathroom. That part actually gets funnier the more time that passes from it, so I will be able to just laugh about this later, right?

I Am Enough

Last night I went with a big group of women from church (FBC Portland) to see Mom's Night Out. It was a great movie! I laughed & cried (of course), and it had a great message in it! It was one of those movies that encouraged me as a mom, and I think that is so important in today's world. Too often we are bombarded with articles, TV shows/movies, Pinterest pins, and comments from others that bring us down & make us feel like we are somehow inadequate as mothers & wives.

I love this quote from the movie, "I'm a mess. But I'm a beautiful mess. I'm His masterpiece and that's enough."

Too often we get caught up in the little things & letting those things bother us to the point where we feel so inadequate & unhappy that it consumes us. When we should be focusing on the things that matter. God created mothers. He has given you all the tools you need to be an amazing mom. When you are feeling like what you are doing isn't appreciated or doesn't matter, just remember you are enough. We try to be the perfect picture of what we think moms are supposed too be, that we can't even enjoy the small victories:  the hugs & kisses, the drawings children make for us (even on walls & furniture), the "I love you's", seeng your child accomplish something they have been working at, seeing your child understand God's love for them, and on and on.

What I took away from the movie is that even when I'm feeling stressed out or frustrated, to take a minute & just breath. To remember that I am enough & to find the positive.

Take today for instance...

I had to make a trip to Walmart (necessary evil)!! Madison is good while we are there, except for wanting to grab items out of the cart. A lot of times these items end up in the floor. Well today the first item to hit the floor was a container of trail mix. A big container... Trail mix flies all across the floor. We get to the checkout line & as I'm loading groceries to be scanned, a carton of strawberry glaze busts open all on the floor. Mortified & very frustrated after the hour we have been in the store it's all I can do not to burst into tears.

We get in the car & I am so ready to be home. Still frustrated I call a Jake & my cousin JD to vent. After I have a minute to calm down, I started thinking about the movie. And you know what? She's being a kid! Accidents happen. I'm thankful that my child is healthy enough to be able to throw something & wants to figure out what things are / how they work. She's trying to figure out the world around her. Today I was the mom whose kid made a mess in Walmart... But it doesn't matter because I am enough.

What do you do all day?

I had someone ask me recently, "What do you do all day since you stay at home?"

Yes, really...

I am not one of those women who always dreamed of being a stay-at-home mom. Actually, my first dream job was to be a meteorologist. Well, until Tim Ross from Channel 4 told me that if I wanted to have an involved family life it wasn't the job for me. Don't get me wrong, even though it's not what I pictured myself doing, I am so blessed and thankful that I have the opportunity to be home with Madison right now. It is the best thing for her, and that is what is important.

I also have had the challenges of being a working mom. I know how difficult it is after a long day of work to come home & have to cook, clean, take care of a child, and try to tackle the never-ending to-do list.

This IS NOT a post that debates if working moms or stay-at-home moms are better than the other or have a more difficult "job." I think that all moms are superwomen & we all have our unique challenges whether we work a 9-5 job or are home full-time. This IS a post that gives you a glimpse into MY world as a stay-at-home mom.

I do get to sleep in most mornings. Definite perk! Madison is a great sleeper. I am NOT a morning person, so sleeping in until 8:00 works for me! I get Madison up about 8:15 & give her allergy & seizure medicine by 8:30. After she gets her medicine, I like to give her about 30 minutes before eating or drinking anything to make sure it stays down. This is partly habit from where she had horrible acid reflux when she was a baby. Some days, she would throw up her entire bottle or feeding all day long. That 30 minutes gives us a little time to cuddle, watch TV together, or play on the Ipad (which she LOVES).

She eats breakfast at 9:00 most mornings. She takes omeprazole for her acid reflux, and it comes in a capsule that we open up and sprinkle on her yogurt. She eats yogurt every morning for breakfast & not much else. She's not a morning eater (just like me). But she does love to drink her milk every morning while we rock in the recliner. So I sneak in a few more cuddles while she drinks her milk.

The rest of the morning is spent playing, reading books, and yes, sometimes her watching TV in her pack-n-play while I try to get a few things done. I have a cleaning schedule that I try to stick to during the week. It doesn't happen every day, but I do what I can. Thankfully Madison hasn't climbed out of her pack-n-play yet, so she's content in there for a little while as long as Mickey Mouse is on & she has some toys / books to play with.

She usually eats lunch around 11:30 & then takes a good 2-3 hour nap most days.

I'm not going to lie... I LOVE NAP TIME! And no, I do not take a nap too. I am not a nap person - there is too much going on in my brain to be able to turn everything off & sleep. After she falls asleep, I eat lunch & watch TV. My guilty pleasure is Grey's Anatomy reruns that come on Lifetime. (And there are some days where something I'm watching hits a chord & I have a good long cry.)While she naps, I also try to finish up any chores I need to get done.

After she wakes up, we play some more until I cook supper (and no, I don't cook supper every day). Weeks like this week, I haven't cooked at all. I am not one of those moms who cook 3 meals a day & have supper on the table when Jake gets home every night. It just doens't work for me. I'm trying to count calories most days & almost every night we have something going on. So I do what I can, but sometimes we eat cereal & sandwiches. That's just how it works out for us. However, every now and then I do manage to get something decent on the table (and the occasional lunch which probably is a nice surprise for Jake).

When Jake gets home, there are some days where I pass on Madison to him & go work out or just go in another room for a little while. It's difficult some days when you have no adult interaction & feel like you have not gotten one thing done. That is probably the biggest thing I miss about being home is being able to interact with adults. Jake comes home for lunch most days, and there are days where I absolutely talk his head off (and bless his heart, I know he just wants to eat and relax because he's had to talk to people all morning). After I have my little break, I can't wait to get back to Madison though. It's crazy how giving yourself just a five or ten minute "time out" can help. The best thing is when I've gone to work out or run an errand & I walk back in the door... she gets a big smile on her face & runs to give me a hug. Melts my heart every time!

After supper, Madison usually plays or we go to church, ballgames, see family, etc. When we are at home, she gets a snack about 8:00, and then her medicine again at 8:30. She drinks milk again with one of us in the recliner & we try to cuddle with her (usually she just wants back down lol). Then she heads to the bathroom & up on her step stool when I tell her it's time to brush her teeth. She LOVES brushing her teeth! Then off to bed for my sweet princess. She has never let us rock her to sleep. She lays down & puts herself to sleep.

Every week, there is one day where Madison has someone come to the house for developmental therapy for TEIS & we go to speech therapy another day. She is going to have OT & PT evaluations done as well, so we may be adding those therapies during the week if they think she needs it. We also have a lot of doctor's appointments. We go to a pediatrician, cardiologist, neurologist, ENT, pulmonolgist, nephrologist, gastroenterologist, dentist, eye doctor, and geneticist. She is on 4 medicines a day & we have medical equipment in the house for her oxygen monitor. So there are a lot of days I'm on the phone scheduling / rescheduling appointments, ordering supplies, ordering / picking up medicines, etc. Sometimes that feels like a full-time job in itself. I don't know what I would do without my planner to keep everything straight.

We have good days & we have bad days like everyone else. There are days where I feel like I have played with her & done great activities with her. She has done well feeding herself & is trying to say more words & has been a good listener. There are also days where it's a struggle to play with her & it's a struggle to have enough patience to try to work with her on things. I'm not going to sugar-coat things & pretend like I'm this supermom who does "Pinterest-worthy" activities with my child every day. It just doesn't happen. But I do my best!

Being a stay-at-home mom doesn't come as naturally for me as I think it may for some other people, but I try to be the best mom & wife that I can be. Some days that's not very good, but I think everyone has their off days. I don't get a vacation or a pension or even a paycheck. But I do get to watch my daughter grow, learn, and discover new things every day. I don't get to travel like I used to, go get pampered, or shop whenever I want to, but I do get showered with hugs & kisses every single day by a sweet little angel that was sent to me from God. She doesn't really say "I love you" yet, but every time I tell Madison I love her, she wraps her little arms around me, says "awww," and gives me a big hug. That's enough of a paycheck for me!

Disclaimer:  I don't want this post to come across as being negative. Being a SAHM is a positive thing for me & is such a blessing! I think people in general tend to only put their "best" on social media & in front of others (myself included). This is simply meant to give my real experience as a response to the question of what I do all day.

Follow Up from Pulmonology Post

I wrote a post a week or two ago about Madison's most recent Pulmonology appointment. In it, I mentioned my anxiety about not hooking her up to her oxygen monitor & how nervous it made me. The oxygen monitor has been my security blanket since January of last year. We still have it for several more months, but we were going to try to wean ourselves off of it (because medically Madison has improved so much she doesn't necessarily need the monitor every night).

So Thursday night, we decided to try to leave the monitor off. About 10:30 I went and got her to sleep with us so I could watch her breathing. About 3:30am she ended up back in her crib. (Jake wasn't getting much sleep, and he has long work days on Fridays). She did great! We didn't sleep much, but she was just fine.

So all weekend, she has slept in her crib with no monitor & Jake and I have actually slept pretty well! Very big step for us (especially for me). If she gets sick or spends the night with someone we will still use the monitor while we have it, but we overcame a big obstacle this weekend.

Next step is getting her transitioned to a toddler bed...

Big Girl / New Activities

Madison is officially done with her high chair! She loves sitting in her "big girl" booster seat at the table. She didn't have any issues with the transition at all.

She also loves to stand on her step stool in the bathroom. Before bedtime, I'll tell her it's time to brush her teeth & she goes right to it! She's still iffy sometimes on getting down by herself, but she's getting there.

We are working on sitting still for some activities too. Her developmental therapist suggested using a pillow for her to sit on. She is doing pretty good if it is an activity she likes (like books or singing some songs). Here she is doing one of her animal puzzles. (She loves animals!)

I tried a new activity today with some plastic eggs and magnetic alphabet letters. I put the letters inside the plastic eggs & then put them all in a bucket. She had to sit on her pillow, and she picked an egg out of the bucket. Then she opened it, and I told her what the letter was / tried to get her to imitate the sound. She was interested for a few minutes, then just wanted to dump them all out. I like it though, so we will try it again!

 

 

Swallow Study / Pulmonology Appointment

Madison had a follow-up swallow study today. Her previous one showed she was aspirating a little bit when she was drinking really fast & she wasn't chewing well which was why she was getting choked a lot. Her swallow study today went GREAT! They didn't see any issues! Yay!

Then we had an appointment with her pulmonologist. She hasn't had to use her oxygen while sleeping since November, but we have kept her on an oxygen monitor at night while she sleeps. He listened to her lungs today & said she sounded great! We thought that today they would take her oxygen / oxygen monitor away. However, we will have it for another 6 months until we go back to see him.

From the pulmonology standpoint, they feel comfortable with her not having to be monitored at night. Medically she has improved so much from that standpoint (which is a relief to hear)! So right now the issue is Jake & I being comfortable enough to not have her be monitored. Hopefully we will get there before her next appointment in October. I tried to tell myself that I would be ok if they took the monitor away today, but looking back I don't think I'm ready. I'm more worried from a seizure standpoint then her having an apnea episode. All of her previous seizures happened while sleeping, and we only knew about most of them because the oxygen alarm went off where she stopped breathing.

I haven't been monitoring her when she takes a nap during the day since I'm awake & can check on her. However, everytime I walk in her room to check on her I have to stand over the crib to make sure she's breathing. I'm holding my breath until I know for sure she's ok. It's a horrible thing everytime you go check on your child to get flashbacks to the other times you've walked in to find her blue & not breathing.

I don't know if I'll ever be truly ready to have her not monitored while sleeping, but I know that God is bigger then my fears. And I am SO thankful in the progress that she has made over the last 15 months!

Gatlinburg Trip

We went to Gatlinburg this past weekend for a few days with Mom, Dad, Gigi, Justin, Kayla, & Cameron. Cam had baseball games Thursday, Friday, and Saturday, so we watched him play & got to spend some time with family.

We stayed at Grand Getaway Cabin in Pigeon Forge. It's a great cabin & it's in a convenient location too. It's owned by my great-uncle and great-aunt. The link is below for more information.

http://www.grandgetawaycabin.com/

Thursday we watched Cameron play ball in Knoxville, and then went on to the cabin to get settled in.

 Papa & Madison

On Friday, Cameron didn't play until later in the afternoon, so we ate a big breakfast (thanks to Gigi & Mom), then took Madison swimming. She cried at first when we got in the water, but after a few minutes she got used to it. Then it took her a little bit longer to like being in the float we brought her. After that, she didn't want to get out! She liked splashing & being pulled in her float.

 Uncle Cameron, Uncle Justin, Madison, and Aunt Kayla

 



The field Cam played at Friday (and Saturday) was in Gatlinburg. The view behind the field was so pretty - perfect backdrop to watch a good baseball game!

Cameron - #8 for Greenbrier

Mimi & Madison reading books at the game

Saturday, Cameron played at noon. So we went to his game, then stopped to eat a late lunch at Alamo Steakhouse. We didn't know anything about the restaurant, but it was very good! (with big portions too).

 http://www.alamosteakhouse.com/

After lunch, we took a spur-of-the-moment trip up into the Great Smoky Mountain National Park. The drive up into the mountains was so beautiful. It was also scary at times - I'm very afraid of heights & get car sick easily, so looking straight down off the side of a mountain while driving made me a little dizzy. It was so worth it once you got up into the mountains & could see the beautiful views though!

 Gigi & Mama

 

 Mimi, Papa, & Madison

 

 

On the way back down to Gatlinburg / Pigeon Forge, we stopped at this mountain stream. You were able to walk out into the stream on big rocks that were sticking out of the water. It was a lot of fun - Madison especially loved throwing rocks & making a big splash!

Madison throwing rocks with Jake & Papa

Sunday we left early & ate breakfast at the Old Mill in Pigeon Forge. It was delicious - especially the complimentary banana nut muffins!

http://www.old-mill.com/

We had such a wonderful trip & loved getting to spend time with family. Next trip up is Gulf Shores in June!