8 months

First bath at home on my 8 month birthday! I am still unsure how I feel about the bath, it's brand new to me as I have only been allowed sponge baths until about a month ago. We have to be careful because I cannot get water in my trach but I hope I will learn to enjoy it. Mom and dad have to remember to take life very slow for me, they have to remember that I get overstimulated so easy, that I can only take small bouts of activity, and that I need lots of rest. It's hard for them but we are adjusting. The good news is that they already know exactly how to comfort me and make me feel secure. Dad is the best at this, he loves to snuggle and rock me to sleep at night. They are just spoiling me so much these days! I am working on tummy time, I can lift my head and I push up on my arms but it exhausts me. I reach for toys sometimes but mostly these days I just want to chew on my fingers. I just found these amazing things - my hands - a few weeks ago and they bring me so much joy. I chew on them ALL DAY LONG. It bugs mom at times but everyone reminds her that it's big milestone to meet and also it's a great sign that I am putting something in my mouth. Did you know that I have a big issue with my mouth? I have had so many tubes forced into it that I cannot tolerate anything in my mouth including my passy or a bottle. It's called oral aversion and it's very common with babies who have been through all that I have endured. We work on that a lot at home but right now the only thing I let inside is my own fingers! I weight 15lbs and 5oz!

I am a really big boy these days! I am almost 18lbs! Chunkers is what mom calls me. I am rolling all over the place and I love my tummy time. I stay up on my hands for a long time and I am starting to kick my legs and lift my butt...I will be crawling very soon. I am a very good eater. In the mornings I get cereal with prunes and for lunch I have had sweet potatoes, avocado, applesauce, and green beans. I have found my feet and they make me happier than anything else in the world! You can often find me holding both of my feet screeching with happiness or shoving my toes into my mouth. I have found my voice and I let everyone know exactly how I am feeling most of the day! Right now I am wearing my doc band to help my flat spot on the side of my head and Mom thinks I am cuter with it on! She decked it out for me and finds it hilarious ... if someone asks why I have it she points to the back and says "He's just fixin' his flat!"

I am blooming just like a spring flower! I have grown so much lately - developmentally and physically. I am such a happy little girl - finally! I explore so many things and you can watch me working so hard to figure out what a toy is, how it works, where a noise is coming from. When I want to do it, I work hard at tummy time and roll all over the place just like my brother. We are starting to bump into each other and I get very annoyed at swipes or punches to the face from Matthew. I am obsessed with my bottle. They have to keep it hidden or I will scream and fixate on it! If it is anywhere near me I will do everything I can to get my mouth on it. I have the same foods for breakfast and lunch that my brother has everyday. When I start to get sleepy I suck on my hand or arm. I prefer to have the sleeve rolled up so I can get some good skin sucking! Sometimes they roll my sleeve up for me especially just before a nap. If I cannot get to my hand I will pull my arm all the way out of my sleeve and end up with my shirt around my neck if the parents leave me alone long enough! I weigh ~13lbs and I am finally wearing 3-6 clothes!

As it should be

Life is complete now. There is so much to say - but no way to say it. He's home and my family is under one roof. Over 6 years from the day we started this journey our family is all together. Yes we have challenges ahead, big ones and then the small everyday ones, but nothing will be harder than what we have already faced.

The second picture is Neva being re-introduced to her brother when he got home. No one noticed until after the picture was taken that they both reached for each other and held hands. The two of them seem to be very aware of each other. They stare at each other and smile at each other. Even before Jackson came home he had some many of the same mannerisms that Neva has shown. Maybe they have a special connection somehow. Matthew is more interested in getting his hands on his brothers tubing and looking at all the cool equipment that came home with him. He also likes to get right in his face to tell him stories and share his drool!

The third picture is their first morning home - their 8 month birthday. Nicole (our amazing childcare provider!) bought them matching outfits for this special day and I had all of these visions of sweet, loving baby pictures....that did not pan out! I was getting frustrated trying to get all three to smile or even look at the camera but then I just realized that every day life is what we have now!! So here is everyday life right now...Matthew in his own world trying to get to his foot (or feet) so he can insert them into his mouth, Neva posing and looking for the camera, Jackson staring at his hands that he just found about two weeks ago!

Life is good!

7 months!

Can you believe what a big girl I am suddenly? I have really grown up this month. I can reach for any toy and hold onto it and I am rolling in both directions. I also started physical therapy to help with my hips because they are very tight. I prefer to stand or have my legs straight out so we have to work on making me sit more, which is why the bumpo is perfect for me! I have started to take set naps now and it makes me such a happy girl. I also got to try cereal! I cannot decide if I like it. Some days I eat it easily and other days I bite my bottom lip so tight that Mom can't get anything in. I like to trick her by smiling really big and then just as the spoon is near I close shop! Mom says this is a battle that I will lose though. I went to the doctor yesterday and I weigh 12lbs and 8oz. I am slowly starting to move into 3-6 clothes.

P.S. I have my daddy wrapped around my finger. When he is in charge ... well it's really me in charge! Last Sunday during my afternoon nap he let me cry for almost 10 minutes and then let me sleep in his arms for the next hour. Later I heard mom tell him that I have to stay in my crib and cry regardless of how long it takes...she is the nap enforcer!

Look at what a big boy I am! I weigh 13lbs 3oz and the doctors think it's amazing that I am on the growth chart for my adjusted age (4 months) considering all that I have been through. We think it's a strong sign that I am going to be just fine eventually! I am even moving into 3-6 month clothes just like my sister.

My days are so busy. I get PT, OT, speech, and recreational therapy everyday and it exhausts me. I also get to take a bath in my big boy bathtub every morning. Mom has filled up my room with all kinds of stuff like my swing, a bouncy seat, my boopy, toys, and even a floor gym. I finally get to do all of the things my brother & sister have been doing. I am tracking toys with my eyes and starting to reach for toys when I am on my back. If I am on my side I reach for them with both hands! I am also working really hard on tummy time and head control. I have started to enjoy tummy time and even though I can't push up or hold my head up yet the therapist can tell that I am trying hard (she keeps her hands lightly on my muscles to see if I am working or not!) and my body knows what it is suppose to do. My speech therapist is trying something new this week called VitalStim. It sends very weak electrical currents to the muscles in my throat area in hopes it will stimulate them to respond. My airway is so damaged from my ET tube, my weak muscles, and my trach surgery that I can't swallow very well so we are trying to shock them into working stronger!

Mom chose this picture so you can see how big I am AND because I am giving her the rock on sign (my right hand)! Because you know I AM A ROCK STAR!!

Here I am - still being the leader and still being a chunk! I weigh 15lbs and 12oz! I am so long that my 3-6 onesies are getting tight! My newest trick is grabbing my toes and rocking all around. I am even putting one foot in my mouth. My other new trick is rolling onto my belly when I am sleeping in my crib. This scared both of my parents to death the first few times but they are finally relaxing. Mom even woke me up a few times through the night turning me back over! From that you know that I am rolling all over the place and even lifting up my butt during tummy time which means I am one bit closer to crawling! I have also turned into a big time eater. I open my mouth and eat my cereal with no problems. Mom has to get on that baby food because I am ready for something new!

I have also started to reach out to mom and dad when I want to be picked up, which is almost always. They think it's so sweet and it's harder to resist me now!

I am still struggling with my teeth and it's getting worse. I drool everywhere, keep both hands in my mouth, and moan/wimper a lot especially in the evenings. Everyone is so ready for that tooth to break through. I picked up a little cold in the last week and my nose is stuffy. The doctor says it's fine as long as I don't run a fever. Mom feels bad because it was her that shared it with me!

P.S. Just ignore my crabby sister in the background of my picture. We often do!

P.S.S. If you want to see the picture of us in a bigger format you can just click on it!

Who is that baby that looks like me???

It has only taken 7 months but Neva and Matthew are finally starting to acknowledge there is another baby in the house! In the last month if I am holding one of them the other looks at me really funny like "wait, you are holding a baby but I am on the floor". Neva has been trying to engage her brother for a few weeks by rolling to her side and smiling really big at him, reaching out to stroke (scratch) his face, and sharing her spit up but he refused to give into those baby blues.

I guess he realized she isn't going away because now he reaches for her or lays on his side and stares at her with wide eyes. Sometimes I find them rubbing each other's arms, playing with each other's hands, or just laying on their sides staring at each other. I have no idea if they are realizing they are not the only kid on the block or what but to me it's the ground work for a lifelong friendship!

Cabin fever

Ok it's happened...after staying shut up almost all winter it's starting to wear us down! This past Saturday Brian was spending the day with Jackson so I decided to be brave and venture out. Destination: grocery store! I loaded up the babies in the double stroller and we headed out with me wondering if I was asking for trouble. I was prepared to leave all groceries on the floor and run out if need be though!

Things went fine! I used the basket on the stroller for heavy items and just used my reusable grocery bags to carry the rest of my items. Neva lost her temper a few times but hey who doesn't get annoyed at the grocery store on a Saturday right?!!

Taking in the world

Just a few glimpses from this past weekend with our little miracle baby. It's so exciting to watch him experience new things and take in the world for the first time. He is such a curious little guy and loves any music or toys with noise. He LOVES to be held and talked too. One of the hardest factors regarding the trach was that we would not by able to hear him anymore but that is kinda ok now. It's amazing how easily you learn to read his eyes and face and know what he is thinking or how he is feeling. And again, we are being given little gifts...BIG gifts...like hearing a few small noises. This weekend he had the hiccups and I could hear them. It was so great.

I wish I could explain how it feels, I wish everyone could feel the way we feel right now... all of the things we imagined and hoped for him when he was in the womb or right after birth are gone right now. And it's ok. Everything has been stripped away except the bare basics and turns out that's what's most important. The fact that he can breath now, that he can smile & laugh, that he can sleep peacefully - the basics of life and he finally has them. That's more than he has ever had and it's all we need for him. A lot of the nurses and doctors at his new home have treaded lightly with us as we have discussions and I am quick to tell them not to worry about the words they have to say to us, we have heard worse and faced worse. Right now we don't care about tests results & statistics, we are celebrating every small (HUGE) gift that Jackson is giving us!

Neva's turn

Neva finally get's a shot a the good stuff...cereal! As you can see she was not a fan initially, she pulled out her puppy dog eyes, her little look that says "Daddy don't you see I am not happy please come pick me up" and did her best to push everything out of her mouth that she could. When she realized this was not a battle she was going to win she gave in and actually liked it!
After three days she is better at eating than Matthew! We still get the pitiful looks but once she gets a good taste of it she is ready to go!