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!