How life changes

Life changes so quickly and you just have to sit back and watch. Weston amazes me everyday the things he accomplishes and the challenges he over comes. Weston has caught up so quickly with where his peers are it amazes me and he speaks so clearly. It will be a year in June since he had OT and so he has been doing all of this on his own and what I mean by this is that he is growing like a little boy. He is my adventure, he laughs in the face of danger and challenges it. Which of course scares his mommy to death, I just want to wrap him in a bubble. He loves music and loves to sing. I also loves seeing his letter 'W' for Weston, everywhere we see the letter 'W' he lets us know it.
Weston also loves being a big brother to his new little brother Brenton. He is fascinated with Brenton's eyes and loves to poke them.
I cannot believe that Weston will be 3 in July, this is going by way to fast for me, but I praise God every day that we get to celebrate these little milestones and big birthdays :)

Changes all around

Wow, time is just flying by! Almost Christmas, almost a new year and almost time for baby number 3 to make their appearance.
We are having exciting times here, home school every morning, Quinton and Weston are soaking up so much information. Quinton is begging for school if I don't get school going by 9AM. I know the favorite activity is painting.
Weston vocabulary is getting bigger everyday repeating everything we say, it is amazing me how much he is saying. He really loves music and does best learning by song, which is amazing since that is how I do a lot of my memorization. Weston loves watching Super Why and Word World and playing with his Thomas the train.
I am doing good, 28 weeks and counting. Baby is very active and always letting me know when I've done too much. We can not wait to find out if its a girl or boy, of course waiting till they are born. Our plan is to do a VBAC, so far so good, whatever the Lord has planned as long as both me and baby are safe.
I pray you all have a very merry Christmas and a blessed New Year!!

Crazy fun times

Weston had a hearing screening test yesterday and did great! He passed and didn't have fluid on his ears yeah. We don't have to go back for 6 months we have been going every 3 just to make sure he didn't suffer any hearing loss from being on ECMO. So we go back in February.

We are having many changes in the Rogers' house with two growing boys. Getting our house repaired from a hail storm that passed through Oklahoma in May. We are still waiting to get our windows replaced we had two broken out, which hopefully we'll have the new windows by the end of September beginning of October, yeah in Fall, could have used them during the summer months but oh well.

We are also getting ready for another big adjustment in our house, we are expecting a baby the end of February. This will be our third and we are so excited. I am secretly hoping for a girl but a healthy baby will be the biggest blessing. We go and see the doctor today for my 13/14 week check up. We go and see the high risk doctor the end of September for our ultrasound just to make sure everything is ok. We are excited about going and seeing him and for him to meet Weston.

Another big change in our house is that I am going to start homeschooling Quinton(4) the beginning of September pre-k. I am really looking forward to teaching him and I know Weston will learn a lot too.

I think that's it for now and the on going changes at the Rogers' crazy house :)

Where has the time gone

Wow, I am horrible on updating Weston's blog and letting everyone know how we are doing. We are doing great!! I can't believe that we celebrated Weston's 2nd birthday almost a month ago. We learned that you don't give him cards first because we never get to the presents. We gave him a Mickey Mouse clubhouse musical card and he did not want to put it down.
We had a great time in Colorado/New Mexico with our families. We learned something every important that Weston starts struggling with his O2 stats at about 8,000ft, he drops down into the low 80's. We are so thankful that our parents had a friend close by that used oxygen so she had a portable pulse ox with her so we could check his stating. Something I need to purchase in the future whenever we take trips out of our elevation, just to monitor Weston and it was something I hadn't even thought of. So just an FYI to all other CDH families out there that look at Weston's story.
When Weston turned 2 he hit the terrible 2's. He has been so rebellious. I mean he was before but now even more so, so stubborn. At the beginning of July we moved Weston into his toddler bed. He is really doing good, there are times he comes into our room and I take him right back to his bed and falls back to sleep.
Two weeks ago Weston got released from therapy so we are specialist and thearpist free. It is so exciting, if you would have asked last year if this is where we would be I would have not imagined it. Of course Weston was still on his feeding tube and our GI doctor was telling us he needed a G-tube I praise God that we knew Weston could do it and he has. Slow and steady.
We are so blessed. There are still nights when I lay him down to sleep I just sit there for a minute listening to him breath, it is such a wonderful sound.

Emotional evening at the NICU

Last night we went and visited some of Weston's evening NICU nurses. It was so great to see them and for them to see Weston walking and saying "hi".
As we drove to the hospital I started to get emotional and I told Timothy I didn't understand why. We have been up to the hospital so many times since Weston was discharged and it has never phased me. I think what it boils down to is that we were going at night when we would usually go up and see Weston. A flood of memories were coming back. It amazed me how your mind gets triggered by certain actions and it takes you back to a certain time.
It was so emotional to see Gretchen, Ricki and Carla all of whom took care of Weston while he was on ECMO and for a majority of his stay. Gretchen was there when we first where able to give Weston a bottle. Carla got Weston moved out of the ECMO room when he was more stable. Ricki was always a big support in both rooms. They were all such a big part of Weston's stay at Children's. We were all crying. They all mentioned did we know how blessed we were, I told them yes. They were so glad that we came up to visit so they could see how well Weston is doing. God is so good and continues to bless Weston with great health and a very healthy attitude.
On Thursday we go for his last developmental evaluation. The hospital follows all babies who were in the NICU until they are two. I'll post after his appointment to let everyone know how he is doing.
Weston is doing great and is picking up more words and saying more. His main word right now isWall-e, we watched that movie last week and he caught on to Wall-e and Eve. The other day we had the dogs inside to cool down and he walked over to the gate and looked over at the dogs and said " Hi doggie" we were laughing so hard. He loves singing Jesus loves me and bible bible God's best book.
We are planning a trip the end of this month to New Mexico and Colorado we are going to the Red River encampment we are so excited.

Busy Boys

Time has sure gotten away from me especially since I last posted. Weston is growing by leaps and bounds and is into everything and is so healthy and amazing just to watch him walk around everywhere. He thinks everyone should know him and knows how special he is.
This week has been busy and it is only Tuesday. On Monday we had Weston's hearing screening just to make sure he doesn't have any hearing loss especially since he was on ECMO it is a precaution we take until he is three. He has fluid in both ears, but passed his tested and the lady that did his hearing test was surprised that he did so well for having fluid on his ears. I was so proud of Weston, he sits so patiently waiting for the sounds, there were a few times that he was ready to get down and leave. After his hearing test we went to the NICU to see a couple of Weston's nurses when we were there, which has almost been two years, wow how time is flying. Both Darlene and Blake came out to see Weston. Timothy was holding Weston and when Darlene saw us she thought Timothy was holding Quinton, she was so surprised that it was Weston. It was so great to see these two very special people and for them to see how well Weston is doing.
Today we had another fun adventure, we went on a field trip with a group of our friends to PetSmart. We got to see and hold, a turtle, snake, kittens, lizard, rats(hairless and haired) and see a bird. It was so fun to see the boys different reactions to the different animals. Quinton is more leery of certain animals but more vocal. Weston touched all the animals and the only thing he didn't like was when they put the rat on his shoulder, he started crying. It was so much fun, to experience all these animals.

Hairless rat on Weston's shirt. Quinton with a rat on his shoulder.

Growing up fast

Our God is an awesome God! You cannot say much else when you see His power in your life.

Weston is doing amazing and its the little things that I always catch myself watching with him. For instance I love his laugh it warms my heart, I know what mother doesn't feel that way :)

Its hard for me to believe that Weston is going to be 21 months next Friday. Time is going by so fast! Weston is so independent and doesn't mind showing it especially if he doesn't get his way. He is a thinker, you can see the gears working when you ask him a question. He is a big helper he loves to sweep and vacuum. His newest trick is pushing buttons on and off. He thinks it is the funnest game ever. Last Sunday he walked to Bible class all by himself with his bible in hand.

Last year we were just getting out of the hospital for the third time. Weston had caught RSV and the RSV was turning into pneumonia, as a parent you try to be strong but with the ER doctor is calling for the crash cart that is when you break. I was calling everyone we knew as we sat in the waiting room while the doctors worked on Weston. Praise God He prevailed and Weston was stabilized. He had a hospital stay of 5 days. As I look back I praise God for our experiences even though they were bad it really makes you appreciate what you have. I praise God that we have been hospital free for a year!!(knock on wood) We have had to give Weston breathing treatments but other than that he has been a healthy boy. He isn't in any isolation which is nice.

Weston received his last RSV shot for the season. I thank God and his doctor that Weston had this extra protection for one more year to allow his lungs to get stronger. Of course Weston is excited he doesn't have to have a nurse come out to the house. He knows when they pull out the scale to weigh him what is happening it is so sad.

One thing about Weston that amazes me he loves lifting up his shirt which reveals his scar, I know he is just being silly but seeing it everyday and a smiling face above it always makes me realize how blessed we are.

Thank you all for following Weston's progress we are so blessed that so many people care and are praying for Weston's continued health. Don't forget to count your blessings and name them one by one because you'll be so amazed at what you have and what God has provided.

Happy 19 months!

Happy 19 months Weston!!

Look how far you have come my amazing little man, you have accomplished so much. This time last year you were on oxygen, NG feeding tube and pretty much being propped up by mommy or daddy.
This year you are on room air have been for 10 months, eating solids and pretty much everything in front of you for 7 months and walking every where for 4 months. Wow thank you Lord.
You continue to amaze me, you are km free even though we need to make a trip to the hospital just to see everyone. Your pediatrician's office loves you even though they probably wish we would go for well baby visits they know you.
You are start to get down a little run and trying to keep up with Quinton where ever he goes. You are getting very independent and when brother doesn't listen to you fuss at him you go to bite him to get his attention. You love to break free after church service so you can go and run up to the front of the auditorium and crawl onto the stage. You are an extreme momma's boy and do not like to let mommy out of your sight. You love looking at books and especially like the Tag reader that reads the story to you. You are getting another bottom tooth in so now you have 12 teeth. You love to go outside and play and love to bring me anybodies shoes. You say "hi" and wave. You are now sleeping through the night have been for almost a week.
You are an inspiration to us and we love you so much. You are brilliant and are so full of lose and to have all the attention on you.

Thank you Lord for 19 wonderful months of ups and downs, bumps and bruises it means we're growing.

So exciting!!

We are celebrating at the Rogers house and espeically Mommy. Weston has slept through the night for five nights in a row!! Weston had been waking up about four to five times a night and I was getting up with him and rocking him back to sleep which usually took about five minutes or more. So this has been great, last Monday night I let him start fussing for 15 minutes and then would go and comfort him it only took him two nights before he caught on and he has enjoyed sleeping in his crib and sleeping through the night.

A week and a half ago Weston was having some congestion and was not wanting to sleep laying down so I took him to the doctor and he didn't have an ear infection and sounded good in his lungs so we went home and thought he was on the upwards slide of everything. Well the following day he was acting worst so I took him back in to the doctor's and he still sounded clear but his doctor wanted to take a chest x-ray just to make sure and sure enough Weston had walking pneumonia. His doctor put him on a antibiotic just to help him get over the cold faster since walking pneumonia is a virus and you really have to just let it take its course but Weston is doing great.

We are so happy that Weston got over this hurdle. His appetite slowed down quite a bit but this was our first big sickness without his NG tube so I think he did great and so did we. We are continually amazed at how great Weston is doing and we praise God everyday for our little trooper.

God Sent to Me an Angel

This was posted in the CHERUBS newsletter this month and I wanted to share this with all my friends and family. God is so good and amazing.


God Sent to Me an Angel - By Paul Dammon (I found this poem on a CDH blog this past week)

God sent to me an angel,
it had a broken wing.
I bent my head and wondered
"How could God do such a thing?"
When I asked the Father
why He sent this child to me,
the answer was forthcoming,
He said "Listen and you'll see."
"My children are all precious,
and none is like the rest.
Each one to me is special,
and the least is as the best.
I send each one from Heaven
and I place it in the care
of those who know my mercy,
those with love to spare.
Sometimes I take them back again.
Sometimes I let them stay.
No matter what may happen
I am never far away.
So if you find an angel
and you don't know what to do,
remember, I am with you,
love is all I ask of you."

Slowing down services

I am so excited to write this post. Yesterday while meeting with Weston's therapist we decided that we should start cutting back on Weston's OT sessions from once a week which we have had since November last year and go to once a month. This is so exciting and an answer to prayers that Weston is catching up developmentally right where he needs to be. We wrote out a few goals for him they were speech and sleeping through the night :) I know great goals for any kid to have.

We know that it is the prayers and God that have helped our son get to were he is now and we praise God every day for our boy and how normal he is.

Please keep the CDH community in your prayers as new Cherubs and expectant parents are given this diagnoses every day. We need to see more of these kids survive and thrive.

Already 2010

We pray everyone has had a great holiday season and are having a great new year so far.

We are doing great here at the Rogers house. We had a wonderful Christmas season, my parents came down for a week and enjoyed the boys and the boys loved having Grandma and Papa here. We got snow on Christmas eve which was great having a white Christmas. We went sledding in our front yard and had a blast, Weston enjoyed it but wasn't sure about the sudden stop at the end, getting stopped by mommy before he went into the street. We also went to Chucky Cheese while Grandma and Papa were here, Weston loved showing them all the rides he liked to do.

Over the holiday season I found out that there was another baby born with CDH at Children's and his name was Westyn too. I have been corresponding with his Nana and he is dong great. He was born the beginning of December he didn't require ECMO and was on oxygen and IV for a month. He has an NG tube but is taking great from the bottle and the great thing is he is going home today! I am so excited for his family and that he is doing so well. It is amazing how different all these kids are. I know they are all tough.

Now on to what everyone wants to know, how is Weston doing. He is doing good. He has had 3 rounds of synigsis shots this season and is doing good so far. We still battle the occasional ear infection but I know he is doing so much better not having all the drainage caused by the NG tube that he had last year. We haven't put him in isolation like we were in last year, but we are still taking all the precautions of washing hands and staying away from anyone who is sick. Weston is walking everywhere and loves chasing Quinton everywhere. He is starting to shake his head yes and no when we ask him a question. He is also my temper thrower, he has a very independent bone in his body and he continues to show it everyday. He loves anything that Quinton is playing with and that usually starts a fight.

Tomorrow during his therapy we are doing his evaluation and goals and his therapist told me the end of last year not to be surprised if they cut back services or if he doesn't qualify anymore. This is so exciting to think that Weston is developmentally right where he needs to be. What a long journey we have been on.

We continue to get questions on Weston's health and if he is 'good'. Weston is good but we always have to worry about reherniation (which can happen anytime and out of the blue) and lung issues such as pneumonia and RSV(his lungs are growing but they are still compromised). Weston is an amazing little boy and we praise God everyday and we know that prayers are what made our journey easier.

We pray you all have a blessed, healthy and happy 2010!

Where has 2009 gone?

I cannot believe that it is already December and that the Christmas tree is up and Christmas shopping for the boys is done.
When I think about last year Weston being in the hospital three days before Thanksgiving and being put on oxygen because of the pneumonia it amazes me and I praise God where Weston is now.
Weston had his second synagsis shot of RSV season on Sunday right before we head for evening services. He is such a trooper. It always takes me by surprise how much synagsis he gets in each leg I feel so sorry for him. He has a runny nose and a cough, but we are thinking it is allergy and maybe a little bit of a cold. I am staying on top of it and he sounds clear and I am keeping his doctor updated.
Weston is teething finally after 5 months of no new teeth he has to be difficult and have three teeth breaking through one on top and two on the bottom.
Weston enjoys walking more than crawling. He is now getting more confident and trying to increase his speed, it is only at those times that he is chasing after brother and trips over his own feet, its the face first that always hurt the most.

Walking and Growing

Well last Thursday Weston decided that walking was better than crawling. It is amazing to see him walking everywhere. There are still a couple of times that I catch him crawling but he prefers to walk now. It makes him seem so grown up now. It is amazing to look back at where we were just a couple months ago and to see how fast he has developed and changed. I loves following his big brother Quinton everywhere and driving Quinton nuts. He loves eating everything in site which is so amazing just by itself. I praise God everyday that my miracle continues to keep amazing us with each step he takes.

Weston loves playing outside and he especially loves riding in his little car, he thinks it is the greatest thing to open and close the car door and honk the horn.

Weston's been home a year!!

Make an on-line slide show at www.OneTrueMedia.com

A year ago we were bring Weston home from the hospital. I never thought anything would be harder than having to leave your baby in the hospital for three months but coming home there would be more challenges.
Learning how to replace an NG tube, waking up so many times at night to give meds and to give him his feed. After a month of being home Weston catching pneumonia and being in the hospital three days before Thanksgiving. Coming home on oxygen and now getting used to having an oxygen tank in the hallway and oxygen tubing all around the house.
Watching how he is breathing if we need to turn up or down his oxygen watching his pulse ox monitor to see what he is stating.
Doing great until March when he caught RSV which was turning into puenmonia, having a five day hospital stay, I'll never forget the ER doctor calling for a crash cart, words a parent should never hear. Coming home learning how to do breathing treatments and to continue to watch his breaths per minute.
Over coming oral aversion and learning how to eat everything in site. Coming off oxygen after being on it for 5 months after he caught pneumonia the first time in November. Coming off his NG tube after 13 months and having no set backs.
I would not trade any of these experiences. Our faith in God has grown. We did not know if our baby would come home and then he did. We were worried about his catching a cold or RSV and guess what he did, but he/we have over come with God. All through God, without Him we would not be where we are today celebrating Weston being home a year!! Praise God.
Thank you all for all your love, support and prayers through this part of Weston's life.
He continues to amaze us he is cruising around everywhere, he has taken a couple steps by himself. He is becoming more independent and he has the greatest personality, he is a jokester and loves to laugh and smile. He gets in fights with his brother and gets jealous. He eats everything, he loves green beans and hot dogs and chicken nuggets. He is drinking from a sippy cup and loves water. He loves sliding down slides and playing with cars.
We are so truly blessed, I cannot wait to see what we have in store for this year.

Jenny

No more Specialists

We are so excited that we have no more specialist. Weston's GI doctor released him from care two weeks ago and we are praising God. But then there seems to be something missing this time last year Weston was still in the NICU, we were waiting to see if he would take anything from the bottle, wondering if the doctors would let us take Weston home on a NG tube. I am so glad that we only have our pediatrician now. Then the worry starts, worrying about flu and RSV season, you forget about sickness when it has been so nice and warm through out the summer months. I know Weston is strong having had RSV and pneumonia last year and once this year. But still scary. We are going to start limiting visits to the store and mainly just take him to church and try and limit his exposure to things. I know he is stronger this year, I know his little lung is growing and that he is our miracle and he continues to amaze me everyday. I asked my husband last night if I should call him pediatrician just to talk and ask if he was would be worried about Weston this year, but as we talked I started to realize Weston hasn't followed any textbook if he had, he would not be here today. Weston has set his own medical path and I praise God everyday that He is in control.

I love to eat

Weston continues to amaze his daddy, his therapist and myself. We think back to a month ago and he was not eating really anything by mouth a littler here a little there and now he is eating everything by mouth. It is so exciting. I have started giving him bigger bites and he tolerates them all so well, sometimes it is hard to remember what a struggle it was just a couple months ago at his first birthday. His days fluctuate, if he takes a lot of fluids he doesn't eat a lot of solids and then the opposite the next day a ton of solids and less fluids. He loves his vegetables he is not quite sure about fruit, but we are working on it.
Weston's OT is so excited that he is doing so great, he shows no oral aversion what so ever, he is manipulating his food really good moving his tongue just like he should and is managing his food. Weston is also trying to walk every where and he gets into everything.
We have our appointment with Weston's GI doctor on Tuesday and I can't wait to see if he has gained any weight and I pray that we are discharged from his care. Weston has taken huge steps this past month and we know that is it all God and He has blessed us so richly with Weston making all these changes.

Where am I?

This morning Weston had his Bayley developmental study and physical exam by one the of the neoatologist that had him in the NICU.
The therapist who did Weston's study was so nice and it was so neat to watch Weston do the different tasks set in front of him. I was with him for his cognitive test and Timothy was with him for his motor and language tests(one of us had to stay with Quinton)
The results from his test and they are testing him as a 13 months old since he was born at 37 weeks and that is the lower part of the premature scale.

For Cognitive which is how he explores new toys, solves problems and new experiences he got --16 months
For Receptive Communication which is identifying pictures, following simple directions and preform social routines he got --10 months
For Expressive Communication which is non-verbal expression such as smiling, babbling and laughing he got --13 months
For Fine Motor which is assessing muscle control like following objects with their eyes, grasping an object, and bring hand to mouth he got --13 months
For Gross Motor which is measuring his ability to crawl, make stepping motions, support their own weight and stand he got --10 months.
Weston's physical exam went really good, the doctor said he looked good especially for being as ill as he was.

Timothy and I are praising God for these results, the doctor said that Weston's verbal would pick up since he is advanced cognitively. We weren't sure how he would score on his motor skills but his therapist has been watching his gross motor and his muscle tone in his legs. We are so blessed. Another step in us knowing that Weston is getting healthier.
I am still worried about this upcoming winter and the unexpected we had two hospital visits and one we almost lost him. We continue to pray daily that God continues to heal Weston and that his lungs continue to grow and get stronger.

Thank you all for your prayers we know they work miracles.

Jenny

Oh the Places You'll go

Those are the words I keep telling Weston, especially when he is crawling away from me at top speed. He is everywhere and in everything right along with his big brother. I never thought this day would come, when you are used to your baby just being in one place it takes some getting used to, but it is so exciting at the same time, him examining everything for the first time it is so amazing.
Weston is doing good with his feeding, he has some bad allergies and they have set us back a little this week with all the snot draining down his throat but he is doing great. We are working back up to 18-20 oz of milk a day not including all the table food he is eating. It is so exciting. On Thursday we go to the NICU clinic for them to see how Weston is developing which is really exciting he is doing great and I can't wait to show them :)

Feeding is going GREAT

I wanted to let everyone who is following Weston's eating adventure that he is doing great. We haven't had a weight check so I can't say for sure he is gaining, he feels like he is :) Anyways, he is doing great on taking more and more food. He has eaten 1 chicken nugget, 2 pieces of ham and he is getting better and better at more solid food in his mouth. He is up to taking 18 oz of milk a day, which is awesome, we are so proud of him. He has come so far in two weeks, it is amazing and we know that is all because of God that he is doing so good.
Weston is also crawling everywhere and getting into everything. He is also pulling himself up on everything and we are working with his therapist to start walking, which is so exciting and scary all at the same time. My baby is growing up into a toddler like he should but it is happening so fast, usually you get a couple months to move from stage to stage not weeks. But I am so excited that we have come this far and that Weston continues to amaze us. We are so blessed.

Jenny