The Harris Family Blog

January is almost over...

2012-01-29T18:25:00.000-06:00

So as this year starts to fly on by I want to make sure I keep posting at least once every week. Which is a little harder these days. The boys are doing really well. They are VERY active. If it wasn't for laundry baskets and toy tubs we would never be able to walk in this house. lol But thankfully I can clean up one room in about 15 mins with my handy storage bins. :-) I have made about 10 boxes of activities for Braden and a binder with 3 word puzzles and a section for learning colors. I have been letting Braden pick which activities he wants to play and have quickly learned what's easy for him and what's not. He definitely shy's away from the more difficult tasks. But I would guess most kids do. The three word puzzles he seems to breeze thru so I might have to make them more difficult. But I am glad to see what he can do and what he really needs to work on. I will have to post pics of some of his boxes so you can see what we are doing.

Grayson is hilarious. But he is also dangerous. Yesterday we found him climbing the kitchen stool to get on the kitchen island. I am constantly getting him away from the computer and he is so little I am terrified he is going to bust his head at some point. Stephen has been surprised at some of the stuff he can do too. He and Braden are so different. Braden is laid back and cautious. Grayson is a go getter and he doesn't hesitate very often.... he has been known to just walk off the couch without even a second thought as to how far down it is for him.

Braden's progress while out of school has been fairly good but I know he would be doing alot more if he was with his classmates. We have just a few more months before he can return to school. We have mixed feelings but hopeful that Braden's growth will keep him from getting really sick. He is now almost 33 lbs. It's so hard to believe he has grown so much. Grayson is now over 22 lbs. Well I'm gonna have to go because we are having some melt downs, pulling and pinching. They want me off the computer.

Kaleigh Grace

2012-01-23T09:56:00.001-06:00

Today is the 4th anniversary of our little angel Kaleigh Grace's passing. I typically leave the posts to Stephanie but posting for Kaleigh on this day has become my special way of telling her hello. I say it every year and I will say it again, it doesn't get any easier as the years pass. We think of her daily, but during the first part of January, memories flood back to the twins birth and the day we lost Kaleigh. I caught myself going through the older pictures on the blog a few days ago and it feels just like yesterday we were saying goodbye. I relive that entire day in my head many nights as I lay down and try to go to sleep.

Although it is painful to miss her so much, we take solace in the fact we know where she is. It would have been selfish of us to wish she was still here in the state she was in. She has now been made perfect and no longer has to deal with the troubles she had on earth.

The 13 days we were blessed with you mean the world to us. On this day and every day we say we miss you Kaleigh. You live forever in our hearts and will never be forgotten.

Love,
Daddy, Mommy, Braden and Grayson

Successful surgery

2012-01-18T12:54:00.002-06:00

My sisters surgery to remove her cancer was a success. She has additional biopsy's that won't be back till next week but they said they are giving her some radiation anyway to cover and potential problems. So overall she is considered cancer free. HOORAY!!!! I am so happy for her.

On another note Braden is doing great with his new boxes for specific activities. This was put together with the help of his therapists at Lyttle foxes. They are so great. Braden worked with his home school teacher for 45 mins straight no breaks and did fantastic. He really loves the different activities and knowing just what's expected of him to be "all-done". :-)

Grayson has had a nagging cough poor baby. We really don't know why but he did much better last nite and we are hoping he gets over it soon. He is doing well too and Braden's home school teacher said she thinks Grayson is actually advanced in what he can do for his age. Which is great because I was a little worried Braden's development could have an effect on Grayson's as well. But it appears that is not the case. :-)

Pop John and Nana visit

2012-01-16T15:27:00.000-06:00

Pop John and Nana came to visit this weekend. The boys had a great time and are now catching up on their sleep. :-) I met with Braden's therapists last week and we have put together some simple assignments to do daily. This will improve Braden's skills and hopefully help him learn to do an activity willingly instead of becoming Spaghetti at the site of work. hee hee.... Braden can be so content with all still being done for him. Although I have to say he is improving with self feeding. He has had several meals now where he has fed himself the entire plate. Hooray for progress.

Grayson well he is still a little tornado. Just into everything he can lay his hands on. He loves the art easel we got for Braden and has already picked up on drawing straight lines. He also has been climbing the office chair and his book case. It's near impossible to child proof absolutely everything from a climber. He is so little too it worries me but for the most part we are making it.

Tomorrow is SURGERY day for my Big Sister Jennifer. We are hoping and praying this is all she will need to rid her of her cancer. I will post an update late tomorrow afternoon when I find out the results of the surgery. I'm not 100% sure they can tell right away or if she will be biopsied and results in three more days. I know she is nervous and has had to wait longer than anyone would have wanted to.

Here are a few pics from this weekend.

Braden is 4

2012-01-10T10:10:00.003-06:00

Today our sweet miracle boy is 4 years old. So many things this amazing toddler has accomplished, overcome, been through in his little life. We are sooo blessed to have such a gift. He is an inspiration to all those who have met him and will continue to surprise and amaze us.

Too both our miracles Braden and Kaleigh have a great and happy 4th birthday.

one of our favorite pics

Thank you Hatcher's :-)

Developmental progress...

2012-01-06T16:57:00.000-06:00

So I haven't posted alot about our day to day struggles in eating, dressing, brushing teeth, routine stuff. I try not to say too much but at times I feel others going thru the struggles of raising an extremely premature child might like hearing someone else's struggles. Either to not feel alone or to find ways to help themselves and their child.

Braden has been progressing in so many areas but our struggles and challenges hinder progress as well. Braden is VERY stubborn but with that said he is getting better. Braden has been very use to Mommy doing everything and when you have a medically fragile child you have to do alot for them if not everything. But once that child is no longer as fragile it becomes a problem that has to be undone. That is one of our current struggles. Most people do a reward system to break these habits and encourage the child to do tasks. But Braden isn't always a big fan of rewards. He likes stickers OK but not thrilling for him, he doesn't like candy all that much, you can't take him for ice cream so what else can you do? Well we do High Fives and hugs. We still use some stickers and that's a hit or miss. He loves songs so sometimes that works. We also have to remove all distractions. If he has any at all he looses focus quick. Especially if we are asking him to undress, dress or put on his shoes. Another struggle is carrying the weight of a growing child. Most 3 1/2 - 4 year olds can do many things by themselves and want to do alot by themselves. But Braden although capable doesn't always want to walk up the stairs or down them. He doesn't always cooperate to get himself in the car. Or he drops like a rag doll to the ground when he doesn't want to do something. He is 30 lbs now so that is alot of weight and now the nutritionist has given a higher calorie diet to increase his growth even more. Waiting on Braden to encourage and get him to do these things on his own takes a mountain of patience. The best way I can describe Braden versus an average child is this... Grayson walks out of the house and runs down the hill in a matter of a few seconds. Braden walks out of the house and barely makes it to the end of the walk before he just stops and stares or gets excited as he watches Grayson run down the hill. The thought never occurs to Braden to run down the hill with him. Same thing happens in the back yard. Grayson will go pick up a ball without even thinking and throw it. Braden has to be encouraged and shown and worked with to get him going. Otherwise, he just observes everything around him. Not knocking him one bit as he enjoys what he does... but it is an example of how much work it takes to get him to do just the simpliest of things. His little mind is still catching up and observing is more of his learning than actually doing even now at almost 4 years old. When we experience break thru behaviour it makes us teary. Like the other nite when Braden got in the tub with his clothes on ready for a bath and started playing with the toys. (by the way if you undress him he won't get in the tub. He will only get in by himself if he is fully clothed. lol) He got so upset when I told him it wasn't bath nite. We have been bathing the boys every other nite because of Braden's eczema issues. But after that I felt so bad for he wants bath time as an every nite routine that we are trying it out and hoping that lotioning him up real good will keep him from having a break out. The other day Braden wanted to speak so badly that he almost, if he had words, spoke to me. So once again I refreshed my memory on additional signs and am trying my best to use as many signs as possible hoping he will pick up new words. We use to work on just one or two words at a time because it took so long for him to pick them up or want to use them. But he has finally seen the light and realizes how important they are to getting what he wants... so now the work is on us to give him that vocabulary. We have also realized that the only way to get Braden to do his tasks such as pick up toys and put them away or do puzzles is by creating a short lists. What I mean by that is that he has to know exactly what has to be done and what his reward is before he will do it. His therapist are still showing us how to do this properly. So I will share once I know all the different ways to get him motivated. Currently the only thing I know to do is lay out puzzle pcs and take whatever he has in his mouth away and he'll finish asap. lol Just to get that item back. Or just lay the project out in advance and let him casually do what he wants to help. As long as I don't get uptight or frustrated and just kinda roll with it the better it will go. Which is EXTREMELY difficult for me. But I have gotten much better about letting them be kids and having expectations but not to lofty ones. I also am a freak about having all the toys and their pcs. together with their respective other pcs. and parts. lol So when pcs and parts get lost it really gets me. So now I just try to keep them together in an effort to make sure the boys have plenty to do and not for my sanity. They play best when their toys are put together but they don't know if something's missing or at least not yet. I'm sure there will be meltdowns in our future but right now they are too young to worry about it.

So a little about our Grayson. Grayson is still a ball of fire, tornado and daredevil. He is growing like a weed despite his resistance to food. He is currently at my side begging for my attention so I will have to be brief. lol He is catching up to Braden in some ways which is great because he can challenge Braden. They get into little arguments, jealousy spats and sometimes love on one another. Grayson loves bath time and likes to literally climb everything. He is close to walking up stairs, helps at times with putting on his clothes, just discovered how fun it is to dig in drawers and throw his clothes all over the floor, and he loves cars, trucks, ducks and dinasours. He is a hoot most of the time and still likes to bang his head when he gets mad. Which just kills us because well we don't need any additional hospital visits. So far he bangs his head lightly. I think mainly for attention now that he is so close to his terrible two's. We are experiencing a few tantrums when told the dreaded NO but all in all he is a decent listener and obeys fairly well. At least for now... :-) He is also a chatter box even though he is still without any new real words. I'm sure it's just around the corner and sooo excited to see what happens next for both of them. What a fancinating new year this is going to be...

2012 Hooray!!!!

2012-01-01T12:30:00.000-06:00

Well here's to a New Year... we are hopeful that Braden will avoid all major illness and that he and Grayson can grow and develop together. They are finally starting to play together on a regular basis. It's so cute to watch them. Braden will let Grayson take over sometimes just because he enjoys watching others so much. Today we played out in the yard. The first time in a long while since the weather has been so cold.

This week it is back to a full schedule. This past Sat. Braden did awesome during his Taekwondo session and now has two stripes on his new belt. :-) He really loves to kick. On Tuesday and Wed. B will have his homeschool teacher. Wed. morning he will have OT and PT and then speech on Thursday and Friday as well as a Dr. visit Friday morning. I am hoping that the Dr. appt. is over soon enough for speech but we may have to cancel. I do believe Braden's ear is still fighting an infection because he was coughing alot this morning. :-( On a good note his eating is still good and his sats have been normal. Braden is holding his weight really well and only needs one tube feed a day. Hoping it lasts. He still only likes water although he does have a new cup preference and has been willing to try new drinks. Maybe we can land on something good at some point. He is eating yogurt and applesauce again finally. I am so happy because now I can start adding the doucal back in his diet and that is a huge help for meeting his calorie goals.

Here are a few pics Stephen took today. :-)

Fun in the ball pit :-)

2011-12-27T18:35:00.000-06:00

Thank you Aunt Leslie and Uncle Chris. We really like our ball pit. :-)

So much fun... :-)

2011-12-26T13:47:00.000-06:00

We haven't been to Erwin this time of year in a long time. We decided to go and limit our visitors to family ONLY. Obviously to protect Braden's health and thankfully he did GREAT. We have noticed a pattern that any longer than three days and Braden will start having lots of drainage. Not sure if it's just being in a different environment or what. Thankfully since Braden has been on singuliar as long as our visits are SHORT we can take them. Maybe in time we can go longer distances but for now we are just thrilled to be able to get out.

Avery (Braden's cousin) and Braden got along so well. They just had the best time together. We also visited with Matthew and Riley. Grayson had a good time with everyone but seemed a little shy and overwhelmed at times. Riley enjoyed playing Ipad with Braden when Braden would share. lol We visited with other friends as well. Brinkley and Corbin came to visit and Braden just adored Brinkley. Corbin entertained Grayson and just made him laugh and laugh. It was a sweet visit.

Here are a few new pics

A much needed post

2011-12-12T12:56:00.000-06:00

I just realized how long it's been since our last post. :-( We have been so busy. I have been limiting the boys TV as much as possible and that means they need lots of attention. Some days I am just wore out and give in to the DVD's. But overall we are doing really well. Braden does several activities that are equal to what he'd be doing in school. He has actually started using his voice alot more. Still no words but we will take it. He always regresses some in that area while not in school. :-( Grayson is now getting angry with Braden when Braden takes his toys or throws his stuff in the floor. There have been a few moments where Grayson wanted to throw Braden to the ground but then thought better of it. lol They both enjoy getting into the toy bins. Grayson has sustained many an injury due to all of his climbing and Braden has managed to stay out of too much trouble. All in all it's just a big fun fest at our house. Feeding is still an on going issue. But I finally managed to get Grayson to gain weight again. I just give him one serving of carnation instant breakfast a day and it's been helping. I am still offering foods to both of them however Grayson is very stubborn and cannot be tricked fooled or enticed. Everything is on his terms and I mean everything. Braden likes cheeseburgers and BK chicken fries. The chicken fries were not actually for him they were mine but he decided he wanted my food over his... and this has been on going ever since. :-) It's a good thing but does kinda mess me up at times as I don't get a full meal. We are just glad he can eat new things and actually chews them up without gagging on them. Well there really isn't much more to report. Grayson's last Ped well visit he weighed 20 lbs 5 ozs and was 31 inches long. He's a shrimpy. Now he weighs 21 lbs 6 ozs. So that's a huge improvement. I will just have to be careful not to let him get fat. ha ha... Here are some pics from the past few days.

My sister's Etsy site and an update on Braden

2011-11-30T07:35:00.001-06:00

My sister has a new Etsy site to raise funds for her cancer. She is adding new items daily. If you want to buy something that is also helping save a life please visit her site. She has a nice variety of accessories bags, necklaces, bracelets and more.

http://www.etsy.com/shop/JennaGJay?ref=seller_info

Braden's appt. with Dr. Wootten went well. Nothing really new to report and he will continue to do vocal cord injections until Dr. Wootten feels Braden is big enough to do surgery for a more permanent fix. Dr. Adams visit also went well. He said Braden will no longer need ultrasound check ups on his kidneys. He also said that Braden will have to have hydroseal surgery on his left side. Kind of a bummer as it's more surgery but again not anything big and fixable so we are thankful. The other good news is Dr. Adam can do Braden's hydroseal surgery same day as his vocal cord injection and still go home same day. :-)

Well I have to feed these boys so gotta run.....

Last years Tribute to Hailey

2011-11-28T12:28:00.000-06:00

So it's been a year since we had to say good bye to our sweet Hailey dog. I just wanted to repost this in memory of her. We miss you Hailey and you will always be in our hearts.

Make a video - it's fun, easy and free!
www.onetruemedia.com

Thanksgiving week...

2011-11-28T12:19:00.000-06:00

The boys are getting a little stir crazy being couped up in the house so much. If it wasn't for the breaks to McDonald's we would go nuts.   Grayson and Braden both are really into climbing everything. Grayson is very independant yet needy and Braden is pretty much a snuggler and also somewhat independant. I have to say we are very fortunate the kids like to play by themselves. But we also have lots for them to do. They love their toys, games and videos. We play ball and t-ball alot. They both enjoy puzzles and sorting shapes is Grayson's favorite. They also like playing with their Baby E alphabet books. I may have to get a new set soon because they are pretty worn out. It is so amazing to watch Braden actually play with his toys and feed himself. He is doing so great and we are so thankful that being out of school hasn't hindered his progress. Both boys love their bath time and play really well in the tub.

This week Pop John and Nana are down to visit. The boys and Briley were really excited to see them. We are going to get alot of things done while they are here.  :-) I have the entire downstairs reorganized and all the toys have been sifted thru to clean out the old and get some new. We really need toys in this house because the boys spend sooo much time here. It makes it easier on me as well because I have plenty of things to do with them.

Braden has two appts. this week. He has a visit with Dr. Wooten his ENT and Dr. Adams in Urology. Hoping for good reports and really hoping Dr. Wooten isn't going to scope B while he is awake but I'm afraid he might. :-( We are still waiting out the hydroseal issue with Braden and we are really hopeful that this visit will tell us no surgery is needed.   Braden has been doing great at therapy and really does well with his homeschool teacher. I am really excited that he cooperates with Ms. Janet.

Well the boys are down for a nap and I could use one myself so we will update again tomorrow and let y'all know how the Dr. appts went...

What have we been up to....

2011-11-21T09:25:00.000-06:00

Thankfully things have been pretty quite lately. Not to say the boys have been quite.lol Just doing really well at the moment. Braden has been going to therapy in clinic and so far so good. He really enjoys getting out and I just hope he will stay well. They have many precautions in place to keep their kids from getting sick. It also helps that Braden only has therapy one on one and not with other kids.

Braden is doing really well with his home school teacher. :-) He had his first in home speech session on Friday and his teacher said he is so smart. :-) He is really good at getting what he wants without words. I just wish it wasn't hindering him from speaking. I have been really good about making him sign and he has a new sign for movie that he uses often. He is also doing great eating. He will feed himself a grill cheese now. All I have to do is give him a few pieces at a time and he will eat. Now I just need to find a bigger variety. He will also eat sandwich crackers broken in 4's. Which is a big deal because use to if a pc was broken and not cut just perfectly he wouldn't eat it. He would throw the so called imperfect pieces on the floor. lol He is something else but we are so proud of him for getting over his need to everything to be perfect. He even gets his hands dirty now without too much stress over it. I worry sometimes that he will be very OCD as an adult but that concern is gradually going away.

Grayson is doing well but has some issues with his temper. We are working on it but he is still tough to feed as well. His diet is hashbrowns, fruit bars and graham sticks. It's a horrible diet but the ped and research on the net all say it's his age and he will grow out of it. Let's hope so.... He is staying around 20 lbs but I can tell he is growing because his pants are getting shorter and shorter. :-) He is also full of energy and climbs on everything. He is an accident waiting to happen. I almost got sick the other nite because he fell of the computer chair and cut his head while I was trying to cook dinner. One good thing about him being so small is we can't reach up to high yet.

Both boys are working on puzzles during the day. They love them and I really wish that the dog hadn't chewed up most of their Melissa and Doug puzzles. :-( Poor Briley she just can't resist wood objects for chewing. She also loves milk and graham stiks. lol We have lost many a sippy cup and snack cup to the Dog lately. I say it's too many rainy days and not enough time in the yard for her. She also hates when Stephen works late or is out of town. She is like a 4th child in a good way. She is right in the middle of us all the time and the boys love her for it. They can sit on her, roll on her, hug on her, she doesn't mind. She doesn't let them steal her attention and she isn't hard to please. When they go to bed she wants to be in bed with them. lol Unfortunately, they are not old enough for that yet but in time we will let her. She loves G's toddler bed and in the mornings I will catch her sleeping there. When Grayson is done with it we will have to give it to her. She would be thrilled. :-)

These are phone pics so not as great quality but good of the boys. :-)

New fall family pics... :-)

2011-11-14T13:35:00.003-06:00

http://gallery.momentsbypaula.com/main.php?g2_itemId=98408

Last week of school and illness

2011-11-09T14:11:00.001-06:00

Braden really enjoyed his last week of school and will really miss his friends. He was so eager to go on the last Monday that he literally ran out the door. :-) I hate that he can't go. But he is still going to clinic for therapy. It's scary to get out of the house but this year they just couldn't do homebound. Most of his appts. are either first or second of the day so hopefully he will stay well. We are also happy to report he is getting Synagis. Wahoo!!! Just for this year. The Dr. said she just got lucky with whom she spoke to at the BCBS.

So Monday the 31st Braden went to Taekwondo for his last out of house lesson. Unfortunately, little brother found some who knows who toys and had his mouth all over them before Mommy got back from helping Braden. Long story short we all got a stomach virus later that week. We are just now finally getting over it. It was awful. So later today Braden will have a makeup session with his homebound teacher and tomorrow he will make up all his therapy sessions. He will be very glad to get out of the house and so will we.

I'll have some additional pics shortly.... :-) This one was from another pumpkin patch we went to right before lock down.

IEP meeting

2011-10-19T14:02:00.000-05:00

I love Braden's school and the staff that works there.... we had an IEP meeting today and it went sooo well. Braden's preK class is set up in such a way that he gets lots of attention and still has plenty of friends. He is learning so much and his therapist and teachers set reasonable but lofty goals for him. We discussed homebound services and this afternoon I got a call from Braden's past TEIS teacher. She was so excited because she was asked to provide Braden's homebound teacher services from Nov. thru March. :-) Hooray!!!! I never expect that Braden will be able to see the same teachers or therapist but I am so thankful when we do see old friends. It gives the teacher or therapist a chance to see how much he's progressed but also makes it easier on us to transition back to homebound. Braden's PT said Braden has excelled the most in this area and will not need services over the winter. How outstanding is that? He still needs fine tuning she said but he has progressed rapidly. As for OT and speech he has shown some improvement but he is keeping the same goals. As his speech teacher said most children only focus on one Larger goal at a time. So right now Braden's still most focused on his physical abilities. I can hardly wait to see Ms. Sharon's report on Braden's achievements in OT since last week he had a review and it went well. He was very cooperative which will help him in scoring.

Without a voice

2011-10-18T16:52:00.001-05:00

So one of my bigger concerns lately has been how to protect Braden when he has no voice. It's easy to protect him when his family is with him. But what about at school? Well obviously I have to trust his teachers and therapist to look out for him. That's not always easy. There are many things within my own families history that haunt me when I think of things that can happen to Braden and even Grayson. But without a voice makes the potential dangers even more daunting. So I found this website that I think is very helpful for parents with Special needs kids. A kind of guidebook to help us during IEP meetings and just socializing in the general school system itself and the importance of educationing the other students as well as hopefully remaining within the same school throughout Braden's education. Because the best ways to protect him are to have people on his side as well as other students. Volunteers to advocate for your child. We hope that Grayson will help advocate for his brother but that responsibility should not and will not be a burden put upon him. He too needs to know that he has people behind him as well. So I would like to share this link with all my special needs Momma's. :-) Oh and let me just add... I am not worried so much about the verbal abuse. Although that isn't good. I understand kids will be kids and say ugly things... I am concerned about physical abuse in any way shape or form. NOT OK for any child.

http://www.abilitypath.org/areas-of-development/learning--schools/bullying/

Helping family

2011-10-12T09:13:00.000-05:00

Recently my big Sister Jennifer (Jenna) was diagnosed with stage 2 Endometrial cancer. Due to a recent lay off she is without insurance and cannot receive benefits from AHCCCS an Arizona program because she does not have young children who depend on her. So in an effort to fund her fight Paula my other sister and photographer has set up the below website. Please check out her wonderful collection in behalf of our Big Sis Jenna. Thank you all for your support.

http://gallery.momentsbypaula.com/main.php?g2_itemId=98237

I missed the memo

2011-10-11T16:21:00.000-05:00

Well apparently I missed the memo that says schools out a full two weeks for fall break. They sure do get off of school often. It's a bummer for Braden because now he only gets 2 more weeks of school before isolation. :-(

Yesterday after our visit to the Peds office we were pleasantly surprised that the boys do not have ear infections. Braden has one ear that is irritated so we have a prescript for if it gets worse. But he seems to be getting better on his own. We think Grayson is just cranky from teething.

Today we went to the Zoo since Braden is off of school and Pop John and Nana were here to help. We had a nice time although the zoo was VERY busy today. It was a last minute trip but I am really glad we got to go. The boys got to go on a new train ride. It's ridiculously priced at $3 per person for 3 minutes. But they enjoyed it.

No school today

2011-10-10T07:20:00.000-05:00

So no school for Braden today. Both boys are wild and on full speed ahead but I think they may have ear infections. They don't act like it this morning but I think they heard me say Doctor. lol Stephen will be in Chicago this week and Pop John and Nana are down to help with the boys. I am hoping to get groceries since Braden was on fall break we weren't able to go. We still don't take him to the grocery or out to eat unless we spot an outdoor restauraunt. Most of our activities except for the aquairium in Gatlinburg were also outdoors. It's kind of an exchange instead of an answer. You can either take Braden indoors and risk illness or take him outdoors and risk an allergy attack. :-( Thankfully though his singuliar holds some of the allergy stuff back so we have more time before he gets bad. Right before we left Sevierville both boys started up with drainage. I think it was just enough to cause ear infections. We shall see... hoping this week is a good one.

A heavy heart

2011-10-07T13:07:00.000-05:00

So it seems with all good things there comes the bad. On our way up to the Smokey Mountains I got a call about my Big Sister Jennifer. She had been in the ER and was very sick. She lives in Arizona. After running some tests and patching her up they sent her home. We were hoping she would be fine and then on the way home she calls to tell me she has cancer. :-( It's really difficult to describe how this news made me feel. I am greatly saddened but hopeful. My niece Deserea (Jennifer's only daughter) has set up a caringbridge site for her Mom. They are in need of prayers as they are about to embark on a very difficult journey.

http://www.caringbridge.org/visit/jennastone1

Trip to the Smokey Mountains

2011-10-07T13:01:00.001-05:00

We finally gave ourselves a much needed family vacation. :-) We just returned yesterday from a 5 day trip to the Sevierville, TN. We rented a condo with Stephen's sister's family. For those of you who don't know the Hatcher's they have 3 boys. So it was a condo full of boys and 4 tired parents. lol Really though we had a GREAT time. All the boys had flair ups with their allergies during the trip but thankfully Braden's didn't start until Weds and now that we are home he is already doing MUCH better. We went to the Aquarium, Dollywood, Gaitlinburg and Pigeon Forge. Braden and Grayson both rode rides at Dollywood and seemed to enjoy them.

Our house

2011-09-30T16:16:00.001-05:00

Our house is very structured. But it's still a struggle. We get up at 6:00 - 6:30 am. We all get dressed and go down stairs for a little Daddy time before he goes to work. Then it's off to McDonald's to pick up some breakfast. After two weeks of cooking breakfast at home with no progress I broke down and started taking them to the drive-thru. I figure it can't hurt to get them out some especially since we are fixing to go on a 5 month lock down at home. It takes at least an hour to an hour and a half to feed Braden. So we usually don't get up from the table till 9-9:30. On therapy days I usually have to tube feed Braden. Which really stinks because I would like him to be able to eat by mouth if at all possible. I do get him to eat some just not as much and tube the rest to stay on schedule. Therapy days are usually on Wed. and Thursday which means getting out of the house by 8:30-9. Then we will stop at the Sonic after therapy. Tube feed B before school and then take him to school at 11. After we drop B off I usually take Grayson to the store to pick up whatever we need for dinner that nite. Then we go home clean eat lunch and then back to school for 1:30 to pick up Braden. After Braden gets home he has to be fed lunch. So I feed him and then put him down for a nap. Which can be 2 to 3 hours depending how tired he is.... Grayson either cat naps in the car to and from our destinations or occasionally naps with his brother. Those days are few but awesome. :-) While Braden naps I usually spend time with Grayson and do laundry. Braden gets up from his nap usually around 5. We talk about his day and then I let him and his brother play while I make dinner. Or depending on Stephen's schedule I may give the boys their baths and put their PJ's on and then make dinner. It's one or the reverse depending on his schedule. That way dinner doesn't get cold but the boys are still able to go to bed on time. If Stephen works late then I usually feed the kids before he gets home. They don't generally eat what we eat because neither can chew meat right now and neither like salad or mashed potatoes. That's right they won't eat mashed potatoes. :-( But my sister's kids don't like them either so at least they aren't the only one's. Both boys usually are in bed by 8. Grayson sometimes go to bed earlier and Braden at the latest 8:30 pm. On taekwondo nites they both go to bed around 8-8:30 and I usually cook something like tacos. Quick and easy. :-) After dinner the boys usually spend time with Stephen before they go to bed. Both boys still go to bed fairly easily. After the boys go to bed I clean the kitchen and try to spend at least an hour with Stephen then go to sleep around 10-10:30 depending on what else I may need to get done.

Braden is now in a regular twin size bed and he absolutely loves it and does great sleeping in it. He loves to be a big boy. He is helping brush his teeth and dressing himself more and more. I really think the routines app for Ipad has made him much more interested in doing those task himself. :-) I love things that assist in motivating him to do for himself. Grayson has times where he will scream for long periods of time if he is not ready to go to bed. So I make sure he is ready before putting him in his crib. He really does have a mean streak in him but overall he is a sweetheart. He plays independently very well and usually behaves. He isn't a big fan of going to the store and I usually have to run in grab what I need and go. But that's really not a bad thing since I don't really need to expose him to too many germs.

Just one more month till Nov 1st lock down. I am so sad as the boys are going to hate being home all the time. I will really have to work hard to do a nice preschool type schedule at home and hopefully work on some areas of development that just can't be done when we are on a tight schedule with Braden's school and therapy. In home will be much easier for working on Braden's eating skills as we will not have the time constraints that we do now. 1200 calories before bed is a short window when you factor in his schedule, being on the road, his long naps and length of time needed to eat a decent amount. No one knows that struggle unless you live in it daily. Even a parent whose child doesn't like to eat but a few foods (Grayson being one of those) cannot understand the struggles with feeding a child who has been vented and tubed and robbed of his natural ability to eat. He has lost precious time for his oral motor skills and those windows that open the door for speech. My Mom always wishes that she had the books we have today on parenting. Well I'd like to say that although I appreciate and find helpful some of those books they don't have all the answers. No two kids are alike and regardless of therapy and educating yourself on techniques to move your kids forward (preemie or typical) alot of the moving forward depends on the child. If they aren't willing it will hold them back. Bottom line if I have to feed Braden in front of the TV to get him to eat I'm doing it. Some people will say old habits won't be broken. Phooey people... the only habits that can't be changed are the one's you aren't willing to change. If Super Nanny can come in and change an entire family in two weeks than it can be done.

Walden Farms

2011-09-26T10:28:00.000-05:00

This is last years pic and one we took yesterday at Walden farms. These boys have grown soooo much. :-)

This weekend was so much fun. We took the boys to Walden Farms. It was really nice to let them run around and have plenty of help. Pop John and Nana went with us. :-)

Our boys and their weekend....

2011-09-19T15:23:00.001-05:00

We had a really fun weekend even though we just stayed home for the most part. We went down to the neighborhood park for the first time. Not really toddler friendly as it has too large of steps and concrete surrounding the play area. Grayson pretty much smashed his face on the concrete about 10 minutes in so we had to leave. :-( He is a tough little guy though he barely cried and wanted to keep on going. We will have to go to the other park from now on.

Stephen showed Braden how to play in the leaves. That was cute and I posted a video. I also posted a video of the boys with Stephen playing on the slide. The boys do pretty well with taking turns. We are so proud of them. Stephen plays with them in Braden's room jumping off the box spring. Grayson will laugh hysterically everytime. Braden is the cautious one who will watch his brother and then get a little braver each time. It's so cute to watch them together. So nice to see them finally starting to play and fight with one another.

Quick update

2011-09-15T14:20:00.001-05:00

Hello all... Braden has some exciting news to share. For the first time during therapy not at home. Braden said "Hi" to a little girl. :-) His PT and a speech therapist near him both heard him say the word out of his mouth. He hasn't said it again but hopefully will soon. Just the fact that he was able to say a word at all is surreal. We are sooooo excited for him.

Tonite we have a parent teacher conference. Hopefully, that will go well and we are working on NO TV in the afternoons. We have planned activities. :-) So far it is working pretty well.

Grayson is doing great and actually ate bananas with his hands yesterday and today. He is eating so much better. Braden has been drinking lots of water. So I am excited that he is interested in drinking again despite being tube fed. His eating is off and on good and not so great. But at least he eats something every day even if it's not large amounts. Next will be trying regular cups for Braden.

Well gotta go since I am breaking rules by being on the computer. lol Gotta set a good example for these boys. :-)

Exciting new things....

2011-09-10T10:29:00.001-05:00

Well I have to say Braden is really doing well. We started him on Singuliar which seems to be helping him with his drainage. I was worried at first but so far so good. He has been eating really well. He has even learned to use a fork. I have to help him with getting the food on the fork but he takes it and will put in his mouth. That is huge for him. So exciting and even though he prefers to be fed by me it's still a big step. He has also moved into a variety of flavors instead of only eating one food at a time. He is enjoying choices at meal time and that is also a huge step forward. I really think watching the little girls at preschool has had an impact on him. :-) At this last ped visit Braden weighed in at 30 lbs. Wow!!! I am so thrilled and he has also grown in height to 37". He can reach things I don't want him too. lol But that's ok. He is also using his signs and we have gone away from trying to use pictures. We are so thankful he is open to communicating now and making more of an effort. Now we will have to learn additional signs so that we can keep up with him. :-)

Grayson is now 21 lbs and 31 ". He is into everything and loves to climb into, onto, over and under everything. lol He is very curious and such an explorer. He loves the outdoors and is over all so much fun. He is a big breakfast eater and the Pediatrician said not to worry about his lack of variety but make sure he doesn't drink too much milk. So he is doing well. I'm just glad he is eating and feeding himself. I was really getting worried. We are also working on teaching Grayson sign language. It will help his IQ according to research and it will also let him communicate with Braden. :-)

I am posting a video of Braden eating with a fork and pics of the boys playing with their new pirate ship water table. They love it.

Pictures

2011-08-31T13:29:00.000-05:00

Lately the boys won't allow me on the computer without complete melt downs or being all over me. lol So just the pics.... :-)

Braden's new bike

2011-08-28T10:02:00.000-05:00

So we just weren't if Braden would appreciate a bike or be big enough for one. We tried a tricycle but he showed very little interest. So this week I was passing by our goodwill while on my way to drop off the dry cleaning and there I saw an almost brand new bike. I stopped to take a look and all it needed was the chain put back on which Pop John was happy to fix for him. The bike is a little to big. As Braden has short legs and can't reach well enough yet. But almost and I know by next summer he should be big enough. We can now buy him a helmet next. We think he may like something motorized as long as he can sit higher like a big boy. I really think he lacks interest in the lower toys because he thinks their for the smaller boys. He soooo wants to be treated like a big boy. We love it. Nothing better to keep him motivated.

We go to the annual NICU party this afternoon. We can hardly wait.... :-) Pictures won't post so I will add them later.

On the mend

2011-08-26T07:35:00.001-05:00

Both boys seem to be much better the past few days. Braden went back to school and therapy yesterday. He was so happy to be out of the house he gave me a kiss after therapy. :-) I say that because it was voluntary. I didn't have to ask for one. Grayson is still crying out some at nite because of his ear infection. :-( But he doesn't wake up so at least he isn't so uncomfortable that he won't sleep.

Levi is doing really well. He is set to go home today if he is able to eat by mouth he won't have to go home with an NG tube. I know their family is ready to be home. It's tough being in the hospital for long stretches of time.

We have the NICU party on Sunday. We are sooooo glad the boys are well and we will be able to attend.

Grayson's McD's eggs, biscuit and hashbrowns.

Braden eating his favorite pancakes.

Happy to see their Pop Pop.

You just can't be close enough to the TV

Sweeties... they love each other.

Our little sickies

2011-08-22T13:49:00.000-05:00

Both boys are sick. Both had colds and are getting better but now they have ear infections too. Bummer! Hoping they get well soon so Braden can go back to school. We also want to go back to the wade pool and can't till their ears are all good.

Better day....

2011-08-19T10:08:00.000-05:00

Braden is doing better today. Much better and we are so happy. It was a little nerve wracking worrying about how sick he might be. He was pretty good even yesterday afternoon. He was smiley despite his drainage and red nose. He hates when I use the bulb suction on him and saline. I'm sure most kids don't like it but I hate being the bad guy.

Levi is doing great medically. His surgery only took 4 hours which is wonderful and his Mommy said that Dr. W had a huge smile on his face when he came out of surgery. However, they did not keep Levi under heavy sedation last night like they did Braden. :-( So Levi is suffering from pain and it is difficult for him and his Mom. They had a rough night and hoping today things get better.

Last weekend and today

2011-08-18T16:14:00.001-05:00

Braden and Grayson had a great time last weekend at the wade pool. We will be spending alot more time there now that we know it exists. :-) We also took Braden to his first Fair. It was so much fun to see him having such a great time. We rode the ferris wheel and Braden got to ride a donkey named Eeyore. Eeyore is my favorite Pooh character. This week Braden is sick. :-( We took him to the Pediatrician this morning because he was having horrible drainage. They think it's just a summer cold so he is on steriods and breathing treatments for the next few days. Thankfully no fever and he is running around smiling so that's good.

Our good friend's little boy Levi went into his trach reversal surgery just about and hour ago. Please keep them in your prayers. We are hoping everything goes as smoothly as Braden's surgery. Their blog is http://www.rochelleray.blogspot.com/. I will post again tomorrow pending news of how things are going. It's going to be a very late evening for them with such a late start. We are so excited for their family. Such a big step.

Update

2011-08-12T07:11:00.000-05:00

Well I didn't have to stay on the real food feeds very long. Braden is eating really well so now I just do regular tube feeds. At least now I have a new way to kick start eating without cutting Braden off the tube. It's a much better option without sacrificing his weight. :-)

School and therapy are taxing Braden a little but overall he is doing well. I am making sure he doesn't skip any naps and that has helped so much. He is also eating well so I know that is helping too. He is so excited to be back at school and loves being out of the house. So does his little brother.

Braden had his follow up cardiology appt. this week and overall the appt. went well. They are going to continue to follow him so we go back in another 6 months. I kinda wish we were done but I guess no meds or alarms means were ok.

Well I don't have any pictures today and Grayson is not in the mood for me to be on the computer. So this will have to be all for now.... :-)

Progress....

2011-08-05T08:52:00.000-05:00

I started giving Braden a few real food tube feeds because I have heard several people say their kids will eat more by mouth when you add real food. Not that the Pediasure isn't nutrition. Obviously it is a good way to feed your child as well as convenient. But when your desperate for your child to eat at least something by mouth it is worth a shot. In Braden's case it is working. Last nite he ate small bites of french fries and a cheeseburger. This morning he ate grits and eggs. I made the grits thick so they would have plenty of texture and he didn't even spit them out. He loved them. Grayson loves grits and eggs too. It's the best meal of the day for him. Next I am going to crumble some bacon in for extra protein and calories. I also want to add I make sure Braden is getting his Pediasure too so I am not doing all real food feeds. My base for the real food feeds is always a half cup whole milk and 2 tbsp heavy cream. Then I add grits, eggs, yogurt and a fruit for breakfast, lunch I might do something like beans, avocado, and coconut oil, or gerber chicken and gravy with a stage 3 vege and either butter or Olive oil. If I add a grain I either use gerber mixed grain cereal or a slice of toast. You just have to be careful with cereal and bread or you will have to add more liquid. I try to stay away from juices to reduce sugar intake and I also use real fruit that is ripe so it's soft and liquefies more easily. Or I will use Beech nut stage 3 fruit if I am out of the fresh produce. This way I don't have to invest in an expensive blender and put a bunch of money in feeding B this way. Keeping the Pediasure on the schedule I don't have to worry about his vitamins and minerals being adequate for the day.

We already have Braden scheduled for his private speech therapy. :-) Ms. Chantelle has worked with Braden before and we are so excited she is available for us again. I am so thankful for Dr. Wootten working with us on this and for Lyttle Foxes too. Braden starts preschool on Monday and we can hardly wait. I am so anxious to see if he can go all three hours and not have to come home an hour early. We want him to get every bit of help he has offered to him.

Great news!!!

2011-08-03T12:57:00.000-05:00

I can hardly believe it but Braden has been approved for private speech therapy. We have a new case manager with BCBS and Dr. W wrote a short letter explaining why he felt Braden needed therapy. :-) We are now in the process of setting up sessions. We can hardly wait between school and private therapy. We're sure he will expand greatly in his communication. He has already doing much better than in the past. :-)

Eating and a few other things...

2011-07-30T11:44:00.001-05:00

Well I am happy to say Grayson is eating some new foods. He is willing to eat Eggo mini cinnamon toast, loves Grits (our little southern boy), puffs, yogurt melts and a few other things. Not the variety I'd hoped for but it is progress. I'm sure it will all come in time. I have noticed he is acting the same as Braden at times with food. I am certain the behaviours are crossing over to baby brother from big brother. But as long as we can work away from them we should be ok.

Braden has lost about a pound. He is eating but he is on a Gerber lil crunchies kick and we all know the calorie intake on those is minimal. :-( So I have put him back on 4 cans of nutrition a day. His nutritionist is out of town right now so I can't ask her what she thinks until she returns.

Preschool starts on Aug 8th. I am so excited and nervous for Braden. My fear is obviously illness. But my excitement is his developmental growth. He has excelled so much since just 6 weeks of school last spring. We are anxious to see what the fall term will do for him.

Braden's latest procedure for his vocal cord injections went well. We are hoping to see some additional progress in his signing and maybe some letter sounds coming out of his mouth once school starts. I am working on some poster boards for language that I should have completed this weekend. I am hoping this will help with his communication skills. I am also working towards helping him to communicate without pulling on people or pushing him towards what he wants... this will take alot of effort on Braden's part. He will have to learn another form of communication either additional signing, word card use, or actual speech.

Our trip to Erwin....

2011-07-25T18:52:00.000-05:00

Before I start about us I just want to say Dax (Braden's friend) is now home. He is on the mend and hopefully will be fully recovered soon. :-)

Our trip to Erwin was great. The only thing that wasn't so great was the drainage Braden had due to allergies. We don't know what he is allergic to up there but every time we go he suffers tremendously. It's so sad that we have to stay for such a short time because of it. :-( Other than that we couldn't have asked for a better visit. Here are some pics... :-)

Need a little help for a friend....

2011-07-21T18:58:00.000-05:00

Braden's taekwondo buddy Dax is in the hospital. He has been running a temp off and on and has been having seizures. They have him on a seizure med that has stopped his seizures but they are still running test on him. He has two new suspicious areas on his brain that the Dr.'s are investigating. Please keep this precious family in your prayers. If you'd like to send them an ecard please do so at the link provided. Thank you soooo much.

http://www.childrenshospital.vanderbilt.org/interior.php?mid=1985

We are going on our out of town Erwin trip tomorrow. But I will post when I return to give an update on our sweet friend Dax. Praying he will be all better and back home before we return.

more updates

2011-07-18T10:47:00.001-05:00

Ok so I have a minute... both boys are happy at the moment. lol Grayson is finally eating. He loves yogurt melts and puffs. So that is a huge step for him. I actually had to use feeding therapy on him to get him to finally eat. Up till now it was all baby food and nutrigrain bars. Grayson is also now using a sippy cup. I had to meet him in the middle because he insist on drinking laying down which wouldn't work with a regular cup. I will give him a few months and then try again for a regular cup.

I am getting ready for the next big garage sale. I will have alot to get rid of and hoping it goes as well as last time. I would love to buy some new stuff for the boys. We want to see if Braden can ride a big wheel or if he is interested in a bike. Hoping he can try one out this weekend at his cousins. That will give us an idea of his interest level.

July

2011-07-18T08:50:00.000-05:00

Braden is in my lap playing with the Dwight bobble head as I type this post. lol We are doing really well except for not getting out due to the heat. We are really wanting to go to the Zoo with some friends but we haven't seen a break in the heat. Not sure if we will have a plan B if this playdate doesn't happen. Also, Braden has been doing really well in therapy. This week is super busy. We have therapy three days in a row and we are all going for haircuts. We are also planning to be in Erwin this weekend. :-) We are so excited. Floy will be down Tuesday evening and she will help us take our trip. Darn their went Dwight and he no longer has his head. I will have to cut this short because Braden is not happy now and Dwight has bit the dust. :-( Anyway, we should have a very nice and fun weekend.

What have we been up too... :-)

2011-07-11T10:01:00.001-05:00

Well we have ventured out a little now that Braden is doing so well. He is now 29 lbs + and we think he may have grown in height but not certain. The boys are displaying some independance and other times they are needy. We have been playing alot outside in the pool to keep them happy. But we also take a drive occassionally. We started Braden up for summer school therapy. He goes Tues and Thurs. at 9 am. We have also let him go back to taekwondo. He did so great last week I was amazed at how focused he was... he and his friend Dax were very happy to see each other. Grayson enjoyed playing and was really good and kept himself busy while I worked with Braden and his instructor. It was really nice to get out but especially great to see Braden really enjoying his taekwondo. What great therapy and it's fun for him.

Braden in half of his uniform. Next week he will be in full attire.

Grayson playing with the belts. lol

Grayson is teething really bad right now. He was doing really well with self feeding and trying new foods but we are now back on baby food. He has gone to Stage 3, he will eat his yogurt cold and now different varieties, and he will eat applesauce cold too. So those are new for him. He still doesn't like a sippy cup. I keep hearing on the TV and seeing on the internet how sippys ruin their teeth. I also saw on the news that they are trying to get warning labels on sippys for this very reason. Sooo I am going to brave regular little cups and see how Grayson does... during transition it is suggested that they have a drink with their meals and a bottle other times. They also say not to let them carry their bottle around because they get attached to it. However, I have never let Grayson carry around his bottle. He drinks it and then we take it away. So I don't think it's an attachment issue. I think he just doesn't like the spouts on the sippy. Grayson has also grown although I don't really know how much. I just know that he is wearing 12-18 month clothing now. He is so fun to watch. He is changing so much and Braden and Grayson are both interacting a lot more than before... they are actually starting to play and take things from each other. :-)

Braden will be scoped on July 27th right before school starts and will have his vocal cord injected again so that he can make louder sounds. :-) It will be nice to know too if his airway looks good after having been intubated. Also, Braden's friend Levi will be having his trach reversal surgery on Aug 18th. Please keep the Ray family in your prayers as Levi will be away from his twin brother Jesse for the first time ever. As well as this being a very big surgery for Levi and the first he has had since the NICU.

Thanks again all for your continued support. We are very thankful to all our friends and family as well as those who only know us through our blog.

New pics... :-)

2011-07-06T10:12:00.000-05:00

We did these late afternoon so the boys were already tired and almost ready for bed. I wanted pics since Braden had been in the hospital and Grayson is now a year old. We plan on doing some additional family photos with Stephen but that will take a little more planning. :-) Hope you enjoy and things are going well. Busy busy ... and tired but loving every minute of it.

Our week...

2011-06-30T07:16:00.001-05:00

I find myself struggling to adjust to changes in our routine. Juggling Braden's feeding schedule with feeding him by mouth and making his early 9 am speech therapy is difficult. Fortunately, Braden can now handle 8 ozs in a regular bolus now which is amazing. But he cannot handle being fed and then bolused. Soooo I have to feed him then wait at least 30 minutes to bolus. He gets 4 bolus feeds a day and then I try to feed him 2 x's plus a snack. Between Grayson's feedings and Braden's it's a lot to juggle. Neither of them are big self feeders. So this post will be short as we have another 9 am appt. with Speech this morning. It was weird because Stephen and I decided it was time for Braden to start getting out again and I started getting calls from the school for summer sessions. I think someone is really looking out for him. :-) Here are the pics I wanted to share. More later... oh and also a big thank you to those bringing us dinners. Wow what a difference it makes to have that one moment in the evening to relax and have something other than fast food... :-) We really appreciate it.

This week...

2011-06-24T09:41:00.000-05:00

This week I played catch up. Yesterday the boys and I had a fun day of just playing. They are missing seeing their Daddy but he is finally over his illness and will be home for the weekend. Yeah!!! Here are a view videos enjoy. :-)

Quick post

2011-06-20T16:27:00.000-05:00

As many of you can imagine we have been really busy. My Mom came and stayed with us for several days and gave Floy a break. We are now on our own and doing fairly well. It's tough getting back into a routine with Braden's schedule being so different. He is still on numerous tube feedings per day at least for another week. He is still having restless nites. He just doesn't sleep as sound as he normally does. I'm not sure how long it will be before he gets back to his old normal. Both boys thankfully are taking naps around the same time. However, the feeding schedule for B does make it harder for me to nap with them. We have also discovered that Braden does better sleeping thru the nite if we keep him downstairs with us till we go to bed. We think that this last trip to the hospital really had a negative impact on him. He is old enough now to express anxiety and fear. We think he is comfortable with our presence and is not getting up at 2 am trying to find us. We do believe some of his restlessness during sleep is somewhat anxiety related. Wondering if he is really home or not. Where we are etc...

This weekend Stephen realized he was sick again. Which has us under additional stress. So much so that Stephen decided to stay down the street at John and Floys. We are really hoping that Braden and Grayson do not get sick too. Braden really cannot afford to be ill as he is not fully recovered from his last illnesses. It's hard not to live in fear all the time. It's worse though when you are trapped at home yet you can't protect yourself from everything. I have been staying home too. Not going to the store or anything unless I have too. Which obviously I do when Stephen cannot. Or we just go thru the drive thru. We do have some nice folks who have offered to bring us some meals which is awesome. That should help us out for a week or so. Maybe Stephen can start feeling better and get additional rest without having to leave every nite for dinner. Ok so I need to go as I have more I could say but I need to feed Braden again before Grayson decides he wants to eat again too. :-)

So great to see him smiling again

Braden's new scooter from Grandma. He loves it.

Cookie face

Braden loves his dog and Briley loves her little man.

Braden's weight

2011-06-13T11:04:00.001-05:00

Braden is gaining about a pound per week. He is now 26 lbs 4 ozs according to our home scale. :-)

Weekend fun

2011-06-13T09:09:00.000-05:00

So all of us decided to have a little weekend fun. Nana and I went to the CMA fest evening concerts while Stephen took care of the boys. We are so thankful to him because we both really needed the break. We also bought the boys a pool. We figured it would keep them busy for the next month of being in isolation. They really enjoyed it although Braden always takes several times of something new before he really loves it. He did really well for the first time in. He likes to splash the water while Grayson loves steeling all the toys. :-) We took the bubble gun and I think Briley likes them more than the boys. She runs after them and bites them. It's hilarious.

Braden is continueing to improve daily. He feels like lead even though I haven't weighed him. I need to do that this morning. He is actually snacking a little despite his high calorie tube feeds. We were pleasantly surprised to see it. Grayson is actually eating some snacks too. Which is also impressive although he is very opposed to the sippy cups. Braden is visibly stronger and more alert. He has a ton of energy. He isn't sleeping as much as he use too. He takes about an hour nap and then we have been having trouble with him sleeping thru the nite. He goes to bed around 7 pm and then wakes up at 2 in the morning. If I can get him back to sleep he only stays asleep till 4:30 - 5 am. I am hoping that will change as it is very rough on me.

Here are some pics. from the boys pool party.

Exhausted but home

2011-06-09T22:05:00.000-05:00

We are sooo thrilled to finally be home. I am tired and the boys are already in bed. So we will share some photos and call it a nite. :-) Briley and Grayson both had priceless moments of joy seeing Braden and Braden did his little happy dance going out of Vandy and then when he got home. The pics just don't do justice to how happy the three of them are...

Braden loved his room :-)

Going home

2011-06-09T10:22:00.003-05:00

We had a great night last night. A swallow study this morning that showed no new issues. Which is great. We are now just waiting for our discharge papers. Yeah!!! Cannot wait to see the reaction between Braden, Grayson and the dog (Briley).

A very good day

2011-06-08T21:27:00.000-05:00

Today has been really good. Braden has been full of energy and has been pulling his pulse ox off all evening. Lol He exceeded expectations during his Physical Therapy session and I am certain he will be back to full mobility by next week. He is going to love being home and I am really hoping we have a great night so we can go home tomorrow. This has been the most emotional and taxing journey. I think Stephen and I both are physically and mentally exhausted. We are so thankful to have our sweet boy back. Thankful for all the prayers and support. It will be so wonderful to have our family together again. Please continue to keep us in your prayers as we never know what will come next. But we sure know that our boy is loved by many and we are looking forward to better days ahead. We are looking forward to getting Braden back outside for the summer and living life again. Here are a few pics of him eating his cookies from his cookie bouquet!!

Getting close

2011-06-08T08:17:00.000-05:00

So today Braden has been completely off oxygen and hasn't needed to be suctioned. So hopefully we will have a good night. Last night Braden wasn't keeping his sats up to 90 and positioning didn't work for him. So we had to call RT to suction him and then he did great for the rest of the night. He was on .25 liters last nite and we will see if he can be off completely tonite. Braden has been very active all day and it is close to 7 pm and he doesn't even look tired. He didn't take a nap but he did sleep until 9 am. Hoping he will go to sleep early so I can get my dinner. :-). I got to spend a little with Grayson today and was so glad to see him. Nana got to spend time with Braden and I think we were both happy to switch off with the boys. Stephen came by tonite and Braden honestly did some signing trying to say something but we are not sure what. :-). Just totally excited to see him trying to communicate. We think he may have been trying to say I love u Daddy because Stephen always signs I love you Braden when leaving. Either way it was super cute and special to see him trying. Hoping we will be off oxygen soon and back together as a family.

Sorry for posting late. The above paragraph was from last night. I sVed as a draft. After typing a draft Dr. Wootten came by and discussed Braden's airway. Everything is fine and we survived with just irritation that needs to have time to go away. Healing from the vent and suctioning could take a while and Dr. W was talking about waiting as long as 3 months before scoping Braden again and doing his vocal cord injection. He said scoping can wait especially since B isn't trying to speak right now. I told him if wenwait then we can do the procedure right before he starts school again like last time. Which is perfect because B is most motivated to speak when he is around other kids. Ok so spelling and grammar aren't being checked this post I am in a hurry. Lastly we had a pretty good night and survived with no oxygen. Braden's stridor is only loud when he is sleeping while elevated behind his head. So now that his congestion is minimal we payed him flat and he did a lot better. Thankful for it because he sleeps at home flat. So we may be going home today or tomorrow. Sorry no pics. We will get more later.

Love to everyone and we will keep you posted.

Monday's report

2011-06-06T23:19:00.000-05:00

Today has went really well. Braden is now on .25 liters of O2. Which he handled very well even during his nap. We also took him off completely for a bit and he did fine up until he started trying to get some mucus out and couldn't. So we went ahead and had the RT do his CPT treatment (what I call chest pounding) and deep suctioning. This was the only one today. So yeah!!! We have reduced treatment. She got a good bit out and hopefully that will make his night go well. ENT had respiratory set him up with extra humidity and that will hopefully help with his strider. At home we crank up the frog humidifier and that seems to work well in his room, but here they have to make him wear a mask. If it gets him completely off O2 it will be great. Thursday will be the last day of his Ativan and methadone taper. So we are hoping all this means we may go home on Friday.

Braden did really well with physical therapy today and can stand up now with minimum support. He is very active but also sleeps a lot. Today after working so hard he took a 3 hour nap. He only got up because I made him. I wanted him to sleep good tonite and have a nice visit with his Daddy. Tomorrow Nana is coming and I am going to meet her at the car so she can come up and visit with Braden while I visit Grayson. Speaking of Grayson he had his one year check up today. He is 28.75 inches and 19 lbs 4 ozs. Barely on the growth chart. Pretty funny poor boys are short because of their Momma. :-)

Sunday

2011-06-05T22:20:00.000-05:00

Today was really good. Braden just gets better and better each day. He actually got to come off his O2 for a short while this afternoon. One of his biggest issues right now is his strider. He is so loud (sound a lot like snoring) when he sleeps. Sometime he does it when he is awake but rarely. Anyway the strider issue causes him to be on oxygen when sleeping in addition to his lungs still having mucus. Braden did a lot today. He got a cookie bouquet as a gift and absolutely loves it. He obviously isn't very hungry since we are using the tube so much but he actually took a bite of a cookie. Spit it out but still came really close to eating it. I will have to start making food that looks like fun - like pancakes with smiley faces. Seems to make sense he would like that since he liked the animal cookies.

I don't know who made this happen but Respiratory came early the past two nights. Thank you thank you whoever made this happen. I will actually get to sleep by 10 tonight. This should give me 8 hours instead of my usual 4 to 6. No one can really function for very long on that...

Thank you to Stephen because he got Carrabas for my dinner. Braden took his nap during Daddy's visit tonite so they didn't get to spend any time together and that is a bummer.
No real changes right now just waiting till Braden tells us he is over it.

Thank you everyone for your prayers and continued support. Goodnight all....

Switching it up

2011-06-04T23:14:00.001-05:00

So today Stephen came to visit with Braden while I got to see our little man Grayson. We all had a great time and it was so nice to go home for a bit. Grayson played and got in the laundry basket of toys. It's something his been doing since I have been at Vandy. I was happy that he did it during our visit. :-). Briley was very insistant I play with her and not Grayson. Lol So Grayson and I played with her together. Stephen and Braden had a fun time playing games and watching DVD's.
Our Dr. Report for today was interesting. Apparently they did see a few small issues that need to be resolved with Braden's heart. The left side heart muscle is a little thick but is not effecting heart function and should resolve in time. The other part had a pretty long explanation but end result is similar... Both things are not a big deal and not surprising for all he has been through... I look at it like his kidney's. He followed up with Urology for forever it seemed about that but no treatment was necessary. Just kept a close eye on it and made sure it was resolved in time and it was. Hopefully after a follow up visit all will be completely back to normal. Again his heart function is back to normal. I also asked how much longer do they think we will be here. They said could be another week and a half but could be sooner. Right now Braden is doing great. He is down to .25 liters during the day and .50 at nite. We are going to try weaning him back down during this evening but last nite he was at .50 so we shall see....Braden is getting more and more active and tries really hard to stand and walk. The big news of the day is Braden is now back to 25 lbs. Yahoo!!!

Friday

2011-06-03T23:18:00.000-05:00

Well we have had a pretty average day. Braden had his echo and we didn't hear anything so we have to assume all is good. I mean after all it is now officially the weekend so if it showed anything alarming we would have been told by now. Braden was having sat issues earlier after a suctioning but is now miraculously healed thanks to a visit from Nana. Seriously I am not joking this kid is laying flat and sats are 100. He hasn't been able to lay flat for weeks without dropping. Not to mention he thought he could just get up and walk across the room by himself. I had to help him but he sure did try hard and did it with little help. He just had to get the remote so he and Nana could watch some Mickey Mouse together. Even little kids need a little normal sometimes. This was her first visit this week that Braden wasnt already down sleeping for the night.

The only frustration we are having this evening is waiting on Respiratory. It is close to 11 once again and they were scheduled for 9:30 - 10 which is killing me because I need to feed Braden and get to sleep. I am so tired and you just can't get much rest around here. I can't go home because then I worry all night. Tomorrow I finally get to visit with Grayson. I haven't seen him all week because I never thought we would still be here. :-(. Well I gotta cut this short Braden has decided to grind his teeth and I gotta stop him. It's like nails on a chalkboard.

Today's activities

2011-06-02T22:34:00.000-05:00

Today we started regular gravity feed boluses with Braden. He is doing just fine and not having any digestion issues. His Methadone and Ativan taper is now every 12 hours instead of every 8. We had lots of floor time today which absolutely exhausts Braden. He is showing improvement and it continues to be slow and steady. His chest compressions with the RT's is down to just 3 times a day. His O2 remains on 3/4 liter and his sats vary from 90 to 100 during the day and 85 to 95 at night. Anything above 90 is acceptable so dipping below 90 sets off his alarms. This is lovely now that Braden is slouching in bed and rubbing his nose so his O's slip off his nostrils. Lol. Makes for a long night for his Mommy. I get to bed around midnight because of his feeding schedule and RT has to coordinate. We can't have a full belly if they plan to suction and make him gag. :-(. I also have to shower at night because it's the only time traffic slows down in our room. Then I have to hope Braden goes back to sleep. Then the parade starts bright and early around here at 6 am. So 6 hours of interrupted sleep means lots of iced coffees and cokes to get me through our day. I try to only leave Braden for short periods of time to grab some food and I always eat in our room.

In case anyone wonders, Stephen and I have always worked together on who does what when Braden is in the hospital. I am the one that can't sleep at home during a crisis with our children. Stephen can't sleep if he is at the hospital. After all Stephen and I decided three years ago that he would work so that I didn't have to. So that I could stay with our kids and take the best care of Braden. Each of us has to do our own thing to satisfy our feelings of helplessness. But in the end we do a lot for each other. We talk a lot on the phone and text to check on each other. Stephen visits as often as possible and makes sure Grayson has everything he needs. At night Grayson is all about Daddy and if we have to learn something from all of this it's when Mommy is away Daddy makes his best impression with our boys. When I was in the hospital having Grayson, Braden had a bonding experience with his
Daddy. Now that Braden and I are at Vandy, Grayson has had that same bonding with his Daddy. I love it because now when Stephen comes home from work they will both be running to him. That gives Mommy a big break. :-).

Therapy

2011-06-01T22:17:00.001-05:00

Today has been good. Braden has had improvement in his mobility. Much to my surprise he was willing to stand with assistance today. He even attempted to take a few steps. His breathing is still rattled but improved. He got a bath, clean bedding and pj's. He had physical therapy and bolus feeds. Tomorrow we will do much of the same. Each day we see continued improvement and for that we are thankful. Today's activity will help his lungs and heart. It will build up his stamina too. Right now 10 mins of work is all he can take...we work several times a day. We brought up toys as motivators and once we are home Briley and Grayson will be the motivators. Lol. I really can't wait to see it. Well I need to go as I think Braden needs suctioning and I have to call Respiratory Therapy. Oh how I hate to wake him but he needs to be able to breathe.

7th floor living

2011-05-31T23:26:00.000-05:00

So today was filled with deep suctioning, chest pounding (compression), and sleeping. We also squeezed in a lot of holding and some floor mat playtime. Braden is very weak. He can only hold up his head for short periods of time. He is unable to sit up without assistance and definitely cannot stand. He is like a rag doll. So we have a lot of work to do to get him back to playing and climbing again. Nutrition has him on a new diet plan so we can take him from 23 pounds to 28.5 pounds. This obviously won't happen overnite but we are using his tube to our advantage to get his weight up and hopefully healthy again. It is obvious at this point that if Braden were to get sick again he could not afford additional weight loss. Once he is nice and strong then we can try to wean him again. It's so hard to balance all Braden has to deal with... He is such a good eater and yet because of his crappy lungs and complicated airway he still has to rely on his g-tube. But RSV will still be a threat to him even after having it once. We hope that if or when he gets it again he will not have such an ordeal. Obviously this chain of events is rare. But there are apparently other things RSV can cause that are not so rare. Like pneumonia and pulmonary hypertension. They said another complication but I can't remember what it was called. We were also told croup is something Braden will most likely get often with any upper respiratory infection. At least we know as Braden gets older, bigger and stronger all these illness's won't be any more of a threat than they are to us. But in the mean time we will do our best not to live in fear. To continue to be diligent with Braden's care so that we can give him the best chance of catching up developmentally, letting him eat, drink, play, and get out in the world while protecting him the best we can from illness.

Grayson is changing every day and I hate missing it. Toughest thing other than the stress of Braden's condition is our family being separated. Stephen and I missing each other and each of us seeing one child more than the other. With that said we don't know when we will be home but we are looking forward to being back together again.

We again want to thank everyone for your prayers and appreciate your continued support.

Memorial day...

2011-05-30T23:09:00.001-05:00

We are now out of the PCCU. Today was another day of chest pounding and deep suctioning. Braden's chest x-rays looked better today but he is sounding really junky again. His O2 is now on 1 1/2 liters. He was suffering with withdrawals earlier today and I think finally he is going to sleep. He hasn't slept for 48 hours straight. Poor baby. At first they thought he may be suffering from delirium, but then our day shift nurse started leaning towards withdrawals. Later I noticed his pupils were dilated, he was slower to respond, he had poor eye contact and the shakes. I told our nurse and she said that confirms it he is having withdrawals. So now he is in rehab. Lol. Jk... but he is getting a round of drugs to taper so that he can level out and avoid withdrawal. He has also been very emotional. Crying one minute and laughing the next. He is exhausted. As I type he sleeps finally. After a long day he is getting some much needed rest.

So glad I can stay in his room and actually get some sleep too. Hoping for a peaceful night. Hoping soon we will be home and Braden can see his newly decorated room. Daddy and Pop John have worked really hard on painting, hanging all the artwork and installed ceiling fans in both boys rooms. :-) Thanks again everyone for keeping Braden in your prayers. This has been a rough couple of weeks. Braden is now only 23 pounds and has some serious recovery ahead of him.

Sunday's Update

2011-05-29T23:33:00.001-05:00

Braden has had another good day. He is now completely off of his pain meds as of today. It may take a few days for it to completely be out of his system, but he is doing good off of them right now. He is still on 3 liters of oxygen but they will likely start weening that tomorrow.

Braden was awake most of the day watching Veggietales and visiting with family. Stephanie was able to hold him some today and he did pretty good. He is very weak right now. Physical therapy is going to start working with him to hopefully get his strength back up soon. They aren't sure how weak he is since he has been in the bed for almost 2 weeks. He laughed some today and had a big smile on his face a few times. It is so good to see his smile and his eyes so alert. You could tell he was getting back to his normal self when he starting watching everything the nurse was doing to him. He doesn't have the strength to resist yet but he will soon.

They plan on keeping him in the PCCU for a few more days just to monitor him and make sure he is completely better. Once he is stronger they will likely move him to a normal room without the restrictions in the PCCU. We are hoping he gets stronger soon but we know it is a process and as excited as we are to get him home, we want to make sure he is completely ready.

We are going to try and get some good pictures of him over the next several days. We didn't take any while he was on the vent. It was the first time he has been vented down his throat since the NICU and its not the easiest thing to see. We are still asking for you prayers for Braden's continued progress. We are also praying that the vent tube didn't do any damage to his reconstructed airway. ENT followed him closely but there is always a risk that the tube affected his airway while he was on the vent. We again want to thank everyone for their prayers during this ordeal.

Stephen and Stephanie

Extubated - Hooray!!!

2011-05-28T22:40:00.002-05:00

Braden has had a really good day. He was extubated around 3 pm this afternoon. He didn't look too great at first but his blood gases were good. Now he is really looking like himself again and is watching his dvds. He is on 3 liters of O2. He still has to be weaned off his meds. He will most likely go home on several different meds but hopefully it won't be for long. We expect that if all goes as planned tomorrow we should be moved to a regular floor. Less attention and more privacy. Big bonus is being in the same room and having a bathroom and a place to sleep close to Braden. It is so wonderful to be in a better place than 2 weeks ago. We have our boy back. He is still not 100 percent and who knows how much therapy he will need after being in bed so long, but at least he is feeling better and much closer to recovery. We appreciate all the prayers and know we have been blessed. God has taken good care of our little man and we are extremely grateful. Thank you everyone for your continued support and caring so much about our sweet boy.

Friday's Update

2011-05-27T21:35:00.001-05:00

Today has been quiet. Braden had many changes last night and a few today. The biggest was getting him off the Nitric oxide which was treating him for pulmonary hypertension. So getting him off the nitric means no more hypertension. Hooray! RT has also cranked him down on his vent settings. They have had 2 CPAP trials. One went well and the second not so much. But that is ok. As one of his ex NICU nurses said "slow and steady wins the race". Braden has definitely been on a steady climb forward and we are thankful.

Braden had a bath last night and tolerated being moved today with little distress. His feeds have been increased to goal and he is tolerating them well. Tonight we were moved to room 5304. Braden is now sharing his nurse which is a good sign of his progress. Braden has been very much awake today and has enjoyed his dvd's. Although you can tell in his little eyes how bad he is feeling. We have gotten into a routine however I think that will be changing soon. Mommy may not be taking advantage of a sleep room now that Braden is awake. He got upset this evening when his daddy and I stepped away to discuss details on decorating his room. Pop John and Stephen have been painting all day getting Braden's room all fixed up for his return home. Grayson is doing well with his RSV. It hasn't slowed him down. He has an off and on runny nose but that's about it. We are thankful for that too.

Thank you again for all of your prayers and we hope tomorrow will bring more good news.

Thursday's Update

2011-05-26T22:18:00.000-05:00

Braden had another good day today. They stopped his paralytic today around noon and Braden hasn't had any issues with it this time. He has had alot of good coughs to clear his lungs and he has been able to keep his oxygen levels up. They have continued to lower his oxygen needs as the day has gone on. Since his heart is stronger again, they have also been able to start his breathing treatments again.

He began opening his eyes today. It was so good to see him awake for the first time in about a week. He is still very drowsy and not totally with it but still, it is good to see his eyes and see him react to your voice. He knows we are there and has been squeezing our hands.

Please continue to pray for Braden's progress. He is making great strides each day but he has a long way to go. Thank you all again for everything!

Wednesday's Update

2011-05-25T23:13:00.000-05:00

Well, there is not much to report tonight. Braden had a really good day. The doctors decided not to mess with his settings to help him get his strength up and to see where he is without constant changes. He rested well and kept his numbers up all day. The next step will be to ensure Braden's lungs are clear and prepare to get him off the vent. There is no timetable for this, its just something that will take time. The effects of RSV can last at least 2 weeks.

Braden did want to thank his friends at Stoner Creek Elementary. His classmates and teachers sent him a handmade get well soon card and all kinds of ecards. He can't wait to get back to school and see all of his friends and teachers.

Braden continues to get lots of ecards and we really appreciate it. It is great to read the well wishes and encouraging words from all of you. We ask that you continue to pray for Braden's recovery and for God to continue to guide the physicians in treating Braden's illnesses.

Stephen and Stephanie

Tuesday's Update

2011-05-24T22:40:00.001-05:00

Today was a good day. Braden rested well all day long and is resting well so far tonight. Early this afternoon they turned off one of the drugs for his heart and he did just fine. Just after that, they came in and did the echo. The echo results came back pretty quick and we were excited to hear the cardiologist say the echo looked great and his heart function was back to normal. You don't know how good it was to hear those words. We had been praying for this result and know that so many others had been praying too. Our prayers have been answered. We can never thank you enough for your prayers during this time.

As good as the news was today, Braden still has a long road back. He still have to overcome the RSV, pneumonia and the pulmonary hypertension he has developed during the sickness. Please continue to pray that he will make progress in the coming days. We know that this is going to be a long process. As bad as we want Braden back home and acting normal, we know that recovering from something like this will take plenty of time.

On a lighter note, Grayson turned 1 today. Unfortunately it wasn't the ideal situation for little Grayson but I am sure he understands. We celebrated tonight by playing trucks and watching Deadliest Catch - 2 crazy guys at home alone.

Thank you again for all of your prayers and support. The number of people who contact us daily letting us know we are on their prayer lists, asking how things are going or just to let us know they are praying for us encourages more than you will ever know.

Tonight's Update

2011-05-23T21:16:00.000-05:00

Well, after a crazy morning - luckily Braden had a pretty good afternoon. They are adjusting his vent settings to help him clear his lungs without having to make him cough. When he coughs, he is working so hard that he just runs out of energy and his sats start to really drop. He hasn't had much food at all for almost a week so he doesn't have any reserves to pull from right now.

He was somewhat aware and able to move this afternoon. They decided not to increase his paralytic to what it was yesterday so he could begin to wake up some. They did switch his medicine to something that will allow him some movement but not much. They increased the dosage tonight to make sure he rests well and we don't have a repeat performance of this morning. The cardiologist wants to make sure everything is good when they do the echo tomorrow.

Please continue to pray for Braden and our family. Today was a rough one. Again with the NICU mentality, enjoy the good days and make it through the bad ones with prayer and faith. We are praying for a good echo result showing that Braden's heart has improved and praying for the doctors and nurses to make sure they all make the right decisions in Braden's care. We also ask that you include Grayson to your prayers - he was diagnosed with RSV today and has been snotty nosed and coughing all day. Hopefully that is all that it will affect him but we are praying for a quick healing.

Again, we can't thank everyone enough for the support you have given us. Your prayers and words of encouragement have helped us greatly. We will make sure and update about the echo as soon as we get information tomorrow.

Not a fun morning

2011-05-23T14:34:00.000-05:00

So they decided to take Braden off his paralytic just a bit and Braden basically turned blue shortly after. This generally happens after when Braden coughs which he cannot do while paralyzed. He is also out of reserves so when he starts trying to breathe on his own and function for himself he cannot sustain it. So once he settled out they told us they also suspect Braden has developed a little pulmonary hypertension that may or may not be temporary. He could go home with it. So all you preemie moms take note. When your child is hospitalized during illness new issues can be developed. That's another reason why we need to protect them. I mean look at us. This is the off season and we are in this awful place. I shutter to think about us not sheltering him and having had this happen earlier. When he was smaller and still on oxygen he may not have been able to fight this... Braden also dropped his heart rate this morning and needed more potassium to bring it back up. It took a good bit too as he was very depleted. This is also a tough balancing act when on lasiks and other drugs. You don't want to give too much or too little. Either could cause problems. Braden also had another much less dramatic desat after the other two events. I am trying to type on iPad so please know I can't proof this easily. Earlier when all this started they thought they had put Braden back on his paralytic. However he settled out and the drip wasn't on... Which is a good mistake because he is actually doing good right now and they decided to go ahead and leave him off. The cardiologist have decided to do Braden's heart echo tomorrow so that the results won't be sketchy after today's events. We want a good echo report so they can get Braden off even more drugs. Ok I am tired and hungry. So I need to go... Excuse all errors and I hope all I typed makes sense... Love all of you and keep those prayers going.

Tiny steps but still going forward....

2011-05-22T20:48:00.001-05:00

Yesterday RT messed with Braden's ventilator and Braden didn't like it. So he gave them a little bit of a hard time trying to make him comfortable. lol Classic Braden reminding them he's still in charge. So last nite and today RT left Braden alone so he could rest and start progressing forward again. As of this morning they said there was little change in Braden's status. But as the day has progressed they have told us Braden's lungs are sounding much clearer. They've increased feedings to 30 ml an hour and he is doing well with that and they have cut one of his heart meds in half to see how he'll react. So far so good and we like changes because if Braden excepts them that means he is progressing forward.

I am at home tonite because I have an upper respiratory infection. :-( Fortunately, I was able to get a shot and a zpac and will only be contagious for 24 hours. I was scared to death I would infect Braden with something else but the Dr.'s said he is on antibiotics and it should not be an issue. Thank goodness. Grayson is also sick and we will be taking him to the Pediatrician on Monday. Not sure if he has what I've got or the RSV. We just can't catch a break. But maybe once this is over we will be better.

We can't thank y'all enough for continuing to check up on our family and keeping the prayers going. Tomorrow Braden will have another echo of his heart. Please pray for a good report and for him to continue to make a full recovery. I'm sure Braden and his Daddy will have a good night. They have definitely enjoyed a good day together and I've gotten some much needed rest and a little Grayson time.

Tonight's Update

2011-05-21T23:06:00.000-05:00

Braden has had a pretty good day. They are still messing with his vent settings from time to time to adjust the pressure and the oxygen. Other than the RSV surprise this morning, nothing new to report. We did speak to one of the doctors tonight and she said that they feel Braden is moving in the right direction. They would hope to start getting him off the vent in the next few days - when the pneumonia and RSV clear his lungs. Of course this could take some time considering Braden's history.

We want to thank everyone again for their continued prayers for Braden and our family. The amount of support we have received is overwhelming. Braden is on prayer lists all over the place. Please keep him in your thoughts and prayers. He has a long way to go but we pray he is starting to head in the right direction.

Stephen and Stephanie

RSV surprise

2011-05-21T12:37:00.000-05:00

Braden is having a decent morning. All Dr reports have been good. They are happy with the current treatments and Braden is showing some slow but steady progress in the right direction. Today we found out Braden tested positive for RSV. Although the news was at first shocking the cardiologist seemed pleased to find out. RSV is one of the viruses that can cause myocarditis. We do not know with certainty that RSV is the cause but all symptoms and responses to treatment make more sense now. The news makes a stronger case for the theory that this heart issue is likely to be viral myocarditis. Now we must wait out the RSV. Once it has left and the pneumonia has cleared Braden can be weaned off the vent. RSV can last for weeks so we are still very much in waiting.

Cardiologist meeting

2011-05-20T21:30:00.000-05:00

There were a few changes today. Some good news is that Braden's pneumonia is beginning to clear. If he can get his lungs free of infection then we can move towards getting him off the ventilator. Which means we could hug and kiss on our sweet man and he could enjoy some of the little things he loves so much. This is not to say that this is anything more than a goal. As we are still very much in limbo and things could change in a moment at this still very critical stage.

Our meeting with the Cardiologist was strictly for information. As Stephen said earlier we are both struggling with the unknown aspect of this journey. What we do know is that Braden's heart is not functioning well and that something has caused it. They have given us two medical terms Myocarditis and Cardiomyopathy. Myocarditis is often caused by a virus and can be reversed or the heart can go back to normal once the virus is gone. Currently this is the most likely diagnosis based off Braden's history and the current symptoms his body are displaying. However, as with most things there is also chance the virus could have permanantly damaged the heart. It is less likely but still a concern. If Braden's heart is permanently damaged or if the heart has just for some unknown reason developed the Myocarditis or Cardiomyopathy then depending on the severity can either be treated with drugs or worse case scenario a heart transplant. So we are still in a very terrifying and fragile position but at least we have something to HOPE and pray for... we obviously want the best outcome and feel most certainly that Braden deserves the best outcome.... So please continue to pray that Braden can fight this virus if that is what it is and that it does not cause permanent damage to his heart. We know at a moments notice things can change and even though Braden had a good day he can still have a bad one....

They have started to treat Braden as if he has a virus and hopefully we will start seeing improvement in his heart function. I am home tonite so I can get a decent nights rest and spend time with Grayson. Stephen is with Braden and they are spending some quality time together. Hopefully we will all have a peaceful night. We appreciate everyone so much for their continued support and prayers. Right now all the love being shown to Braden and our family has given us much needed strength ...

Prayers Please morning update

2011-05-20T08:17:00.000-05:00

Braden had a rough night with more spells of lowered oxygen. They have hooked him up to a few more monitors to check his oxygen. Stephanie spoke briefly with the cardiologist and asked them to basicly lay everything out on the table - good and bad. When we were in the NICU we didn't want to know but we feel we have to know what we are up against this time. We meet with them at 11:30 this morning to go over their thoughts and our options with the risks involved. This has been an extremely emotional morning for our entire family. We are scared to death right now. Its just so unfair for Braden. We try not to think like that but he doesn't deserve any of this. Please pray for Braden's healing, God to give the doctors the knowledge and direction they need and strength for our family during this difficult time.

Thank you,
Stephen

Tonight's Update

2011-05-19T23:09:00.000-05:00

Braden has had a pretty good day. He had his second Echo and the preliminary results showed that his heart hadn't gotten any bigger and appeared to be functioning a little better. The cardiologist feels that the medicine is the right track right now - no need to biopsy or cath his heart at this point. We should know more tomorrow when they come by again. So, as Stephanie and I said - it wasn't good news but its the first news that wasn't bad in about 4 days. Again - the NICU mentality.

Stephanie was able to come home for a bit today to see Grayson and try to relax. Braden and I had a good visit and I kept the Veggietales marathon going. They don't have him as heavily sedated as yesterday to let him begin to cough and clear his lungs. He doesn't really open his eyes but you can see him react when you touch and talk to him. He loves having his hand held - so we did a bunch of that today.

Tonight's visit was not the greatest ever. I was already emotional when I walked in because he was starting to swell in his face. It is something we have seen many times before but when he doesn't look exactly like the Braden I'm use to seeing, it really gets me. Then his oxygen levels starting dropping. A little over an hour later and it was over thanks to some great work by his nurse and respiratory therapist. They remained calm the entire time even though Stephanie and I were somewhat of a mess. Braden has so much junk in his chest that they have to try to get it moving so it doesn't set up in his lungs. Between the vent tube plugging and general junkiness, it was an adventure. I am happy to report that he was resting well when I left.

We can't begin to thank everyone for the outpouring of emails, texts, messages and cards for all of us. It means so much to us knowing that we have that many people praying and caring about Braden. Please keep the prayers going. We have a feeling this is going to be a process to get him all straightened out and we need all of the prayers we can get. Stephanie read each and every e-card that Braden received today (and it was alot). So, you know if you sent an e-card - Braden heard it. He says thank you too.

Hopefully we may know more answers tomorrow. We pray for his lungs to clear and his heart to get stronger. Also praying that it is something that can be fixed or managed. Thank you all again for everything.

Stephen and Stephanie

Prayers Please

2011-05-18T21:00:00.000-05:00

Today took an unexpected turn for the worse. The doctors were having issues keeping Braden's oxygen levels up so they had to place a vent and sedate him to help him get over the hump with the pneumonia. They also decided to do an echo cardiogram on his heart and it revealed that there is something wrong with Braden's heart. It isn't pumping blood the way that it is suppose to. To say the least it was a devastating shock to Stephanie and me. This has easily been one of the worst days we have had in years. Emotions are overwhelming - with fear being at the top of the list.

We did speak to the cardiologist tonight and they are going to start running tests to hopefully find out what the problem is. Unfortunately it could be almost anything. We aren't going to have answers for a few days and even then, we still may not know. We have just been thrown back into the NICU mindset - a mindset we thought we left years ago. We have to go into the unknown and start living day by day again.

We are asking for your prayers for Braden and our family. We pray that whatever the problem is, it is something that can be corrected or managed. Please pray for Stephanie and me too. We are almost at our breaking points right now. We will be keeping the blog updated as much as possible and Stephanie posts to facebook throughout the day. Thank you so much for your prayers during this difficult time.

Stephen and Stephanie

Bummer Pneumonia ...

2011-05-17T07:17:00.001-05:00

Yesterday we went straight to the Peds. office in the early AM. Braden had not been feeling well since Friday evening. I had been treating drainage with breathing treatments and he for a little while seemed to be getting better. He ate decent but not nearly what he has been. Then late Sat. afternoon the drinking stopped and our boy seemed sluggish. So Sunday was worse and Braden started battling a constant fever of 102. Not good. Once we got to the Peds office we did another breathing treatment to find Braden sats were not going up. They weren't horrible just 90 ish. But concerning and Dr. W thought it best to take Braden to the Vandy ER for an xray. So the better part of yesterday was spent at Vandy. I was by myself and Stephen was on stand by. I was so pleased with Grayson because he did amazingly well and I was able to handle both the boys with no phone call to Stephen. Braden wasn't up for anything but sleeping. :-( Poor little guy.

Braden has a small amount of pneumonia in one lung. It's an isolated amount in the lower section so they said it is VIRAL not aspiration related. That was good news. I sure would hate for Braden to be robbed of drinking unthickened water. He loves water. Last nite was very long... we went from Braden's bed to the glider rocker, to the recliner downstairs and then finally landed on the bean bag in the den. Briley was happy because she got to sleep with us instead of her being in her kennel.

Just wanted to give y'all an update. Braden is at least sitting up this morning. But coughing really horribly. He is still pretty pityfull. Here's a few pics. In an effort to save time I haven't been spell checking or anything lately. So if I have mistakes please forgive me. :-)

Sunday - not looking good

Grayson took his yogurt out of the pantry and Briley would like some....

Right after we got home from the ER. :-(

This morning watching Mickey Mouse

Grayson playing well by himself.

What's been up lately....

2011-05-13T15:06:00.001-05:00

Well I am a very busy Mommy these days. I know I have always been but now that Grayson is on the move it's been more challenging. In a GOOD way though. He is pretty good about indenpendant play but has his moments of needing his Mommy and when he does look out. lol We have went from walking to running in a flash. Seems like it's happened over nite. We are still not making any new strides towards eating anything other than yogurt but I have been assured by friends that will change in time. Right now Braden has crashed and will probably take a very long nap. Grayson is at my feet complaining about Mommy being on the computer.

Braden had his first Taekwondo class this week and unfortunately I did not take pics. It's a little early in the process and he doesn't have his uniform yet. The Mommy have to assist in the moves with their kiddos so I have my hands full while I am there. Especially since Grayson comes with us. I will try to get some good pics later as we get into a routine and I have a hand free. Braden is doing really well in preschool. He goes from 11 to 1 now so that he doesn't run out of steam. Braden is off tube feeds again and seems to be doing fine. His weight is still low 24 lbs 13 ozs but we are ok with that for now. We really just want him to eat and drink. He eats well and won't drink anything but his water at present. His self feeding has grown tremendously. He will eat graham stiks, ritzs mini's with peanut butter or cheese, several different kinds of cereal, gold fish, and sugar wafers. It's been so awesome to have a messy car filled with all kinds of snacks. lol Braden eats and will even drink in the car to and from school. I can't tell you how happy and how much easier life has been since he is now able to eat on his own. He is also communicating finally. He is very good with shaking his head yes and no. He is even pointing when prompted as well as waving. Still only when he wants to but his desire to communicate is much greater and we are seeing alot more out of him. :-)

At Cracker Barrel - Braden loves their grill cheese and apple sauce

Braden's new backpack and lunch box

Our sweet little walker Grayson

Braden biting Mickey's nose. lol He loves Mickey Mouse.

Our lives have been so busy and fun lately. We go out to eat, to the park, to and from school and even shopping. I can't tell you how nice it is just to go to the grocery with the boys. All the things we haven't been able to do we can now. So that is why our postings have dropped off a little and for that I apologize. Now I must sleep when I have the opportunity and I go to bed early alot. lol The boys are in bed usually by 8 pm. They get up around 5:30 - 6 am. At that time I have to get them both dressed and fed several times before taking Braden to therapy or school or both. We have a very strict schedule from 6 am till after lunch. Once I pick Braden up from school we either pick up lunch or Braden takes his nap while Grayson is waking up from his. It's amazing we get anything done in between because after I get Grayson's lunch Braden usually wakes up for his. Then before you know it Daddy is home. The days are just flying by and I am dreading next winter. I can only imagine how much harder it will be on all of us to be able to do next to nothing. :-( Braden is now tugging at my arm so I must go... :-) One more thing Braden did well with his vocal cord injection and they will be redoing it for a longer lasting result. Should last 6-9 months.

Grayson walking

2011-04-27T13:25:00.001-05:00

Grayson is only in 9 month clothes and weighs 17 pounds.

Walker in the house...

2011-04-26T15:26:00.001-05:00

Well my friends we have a new walker in our house. Grayson is taking many steps now. He is walking daily and it won't be long till he is walking full time. It is soooo cute and he is much happier now that he knows how to walk. Both boys seem to be feeling better. We just hope it last. Braden is still getting tube feeds but finally today he let me feed him a 1/2 cup of applesauce. His self feeding has increased alot. He loves gold fish, graham stiks and teddy grahams. So that is a nice change. Braden is doing very well in school. His PT said she just loves how social Braden is even with the older kids. She is teaching him boundaries and how to not get run over. lol She says it will take some time. :-) Here a few recent pics...

Hunger strike...

2011-04-21T16:37:00.000-05:00

All of Braden's preschool work :-)

Drinking his WATER

Playing while he waits for Brother to get up.

Just waking up from his after school nap.

Two days now into a hunger strike. Braden will only drink water and eat a few teddy grahams. He is totally fine all of the sudden with tube feeds. I sure hope the only reason is the constant drainage he has been experiencing for weeks now. Other than that things are going well. The boys seem to be feeling a little better and that's really all we can hope since it's only been a few days. Hoping by next Mondays follow up visit they will both feel alot better. Here are a few pics...

Sickness, sickness, sickness

2011-04-19T17:35:00.000-05:00

Right now I have two sleeping boys after a long day of chaos. Braden has had horrible drainage lately and it has finally sent him over the edge. He either eats or drinks but not both consistently. He has now suffered weight loss. What a struggle for our tough little man. I have put in a message to his nutritionist but I'm pretty sure his tube removal will not take place in August. I hate that he has been derailed but I'm sure we will get back on track again soon and meet that goal in time.

Both boys went to the Pediatrician today because Grayson had some yellow drainage this morning and Braden threw up at school (drainage caused nausea). Grayson has an ear infection and is now on antibiotics and Braden they aren't sure so they put him on Steriods. He is also getting breathing treatments every 4 hours for the next 24 hours and every 6 hours for the next 24 after that... and Monday we go back to the pediatrician for a follow up. Let's hope they both get better soon.

Braden's routine scope with ENT has been rescheduled for May 10th.

March for Babies 2011

2011-04-17T21:54:00.001-05:00

We had a great time at the March for babies. We didn't get to the event till about 1:20 pm. It was a tough day for getting the boys out of the house. The boys and I have been hit hard with allergies and all had a bad nite and Stephen is sick as well and on antibiotics. But we have been planning this for months and couldn't miss it. We had a really nice time and we really appreciate our friends who came out to support us.

A special thank you to all the people who donated in behalf of our our sweet babies. Thank you so much Ashley and Cheryl for rounding up so many additional dollars to the cause. All together our teams raised $1390. We are very happy as our goal was only $200. Shooting low worked out really well for us. :-)

Braden had a blast and cried when we put him in his carseat to go home. Grayson seemed to enjoy getting out as well. Hope y'all enjoy the pics..

What's been happening...

2011-04-09T12:35:00.001-05:00

School was off to a decent start. Braden had time to adjust and at first would cry when I was leaving. That was difficult for me. But this week he walked right in his class and seemed very happy to be there. Put a smile on both Stephen and I's faces. Bad news is we have been sick. First I went to the ER thinking I had food poisoning because I didn't realize you can get the stomach virus twice with completely different symptoms. Then Braden unfortunately also got the stomach bug again. :-( He had seemingly gotten over it. Wasn't running a fever anymore and occassionally had a bad BM but nothing alarming. He seemed tired but he just started school and that seemed to be a huge adjustment. Then Friday he fell asleep in class and couldn't finish his day of school. I picked him up and he still didn't have a fever but he seemed to have relapsed with the stomach virus. He had horrible diarrhea. I must have given him 5 baths between 4 and 9 pm. It was awful. So I asked for help from my FB friends. They thought for sure he must be dehydrated even though he was drinking GREAT!!! I mean he was drinking Pediasure all day and plenty of water. But apparently that wasn't helping him. So today he is completely off anything containing diary and is actually drinking pedialyte by mouth. I was going to tube him however, the tube was clogged since we haven't used it in a long time. Also, our home med supply doesn't carry the mickey buttons anymore. So we don't have a back up and I have to ask GI Monday what to do. The good thing is that Braden didn't need to be tubed. He is soooo good about doing what he knows he has to .... it's always amazed us. He is such a tough little guy. He seems to be feeling better but we are really bummed not to be outside and enjoying this beautiful sunny day. I just hope 24 hours of toast, bananas and pedialyte get him past this so that we can enjoy next week.

Monday Braden will be missing school to go to meet with his nutritionist, GI doc and the developmental Pediatrician. We are hoping those appts. go well and I will try to post if anything new comes out of those appts..

It still isn't too late to donate for the March of Dimes walk. Please see the link below...

http://www.marchforbabies.org/personal_page.asp?pp=3596480&ct=4&w=4566369&u=bradenandkaleigh&bt=11

Thank you all for your support.

1st Day of Pre -School

2011-03-28T17:18:00.001-05:00

Braden did really well today. Much to my surprise so did I. However, I was ready to pick him back up long before 2 pm arrived. His teacher said he loved all the other kids and she said he had a great first day. The only thing is he ran out of steam around 1 pm. So right now he is taking a very long nap. But I am sure he will still sleep tonite. He even ate and drank a decent amount today. In fact he has kept up with his normal schedule and even drank well at school. Here are some pics of our Big Boys big day. :-)

Leaving the house

At school

End to a great school day

A much needed update

2011-03-27T22:13:00.000-05:00

My apologize for not posting as often as I usually do... we are soooo busy. :-) Braden had his vocal cord procedure this week. He did really well and we can hear him a little more than before. Although he still doesn't try to speak so it's really hard to say just how much it has really done for him. We are finally free to get out of the house. Which has been awesome. We have been to the park, Cracker Barrell, IHOP and out to some of the stores. Grayson and Braden both got some new shoes this week. Grayson is standing really well but still not walking just yet. He is cruising the furniture extremely well and has good balance. We are thinking he will just take off any minute now.

Tonite we had a blast with Braden at a party for all the preemie kids at Pump it Up. It was a special party provided by the March of Dimes and the families that will be participating at the walk. It was so nice and alot of fun. Braden really enjoyed himself and we got to see some of our preemie friends and their families. It's so nice to finally be experiencing some normal.

Braden has his first day of preschool tomorrow. We are so excited for him and so glad we were able to get him out and see how he felt about everything. We think he will do just fine and hopefully have low anxiety over the new schedule. Although I am a little concerned that he will run out of steam. lol He will have to build some stamina to keep up with his busy schedule. We could tell this evening how much he really is taking in... It's like he is so overwhelmed by so much to see... as if he has been locked away in a box and now just viewing the entire world all at once. We cannot imagine what all he must be thinking but we sure can tell how much he is loving it. :-)

Boys...

2011-03-22T08:56:00.000-05:00

Aren't they cute

Candid's by my sister Paula

another Pic by my sister Paula

Braden and Briley playing in the yard.

Things are going well. The boys and I have both had trouble with allergies but other than that it's been the usual craziness. We are so busy and things are just going to busier once Braden starts preschool. I just wanted to post a few pics. We have Braden's vocal cord procedure tomorrow. The March of Dimes Inflatables party on Sunday and then Monday is Braden's first day of preschool. So lots of good things are happening. Ok well the boys are bored so sorry for the short post. Gotta keep them busy. :-)

T-shirts

2011-03-14T20:46:00.000-05:00

We are ordering Tshirts tomorrow for the March of Dimes walk. If you want to order a shirt please let me or Stephen know asap. Shirts will be personalized in memory of Kaleigh and in honor of Braden. The cost is approx. $10 or less depending on size and shipping cost.

Thanks for everyone's support. We need to order no later than Tuesday evening so that we will be sure to have the shirts in time for the walk.

Update on our boys and their dog... :-)

2011-03-14T14:05:00.001-05:00

We have had a really busy week last week. Sunday nite Pop John and Nana came down to help with the boys while Stephen went out of town for a few days. Thankgoodness they did because one of my tires on my 4 runner had went completely flat. Then Monday Braden decided to pull his gtube out. Usually I can get it back in with no problems. But this time it was a mess. Looked like it had a red lifesaver around it. Red and bleeding and very irritated. So I was unable to get it back in. Which made for a long day in the ER. Fortunately, they were able to get the gtube back in.

I am really hoping Braden won't need his gtube much longer. He is eating really well and gaining weight. His drinking is pretty good but I think it still has a little room for improvement. We are making our own thickner for his drinks and it is working GREAT. He really seems to like it and he is drinking his Pediasure again. In fact he drinks only Pediasure which is also helping him to gain weight. I have found some really high calorie desserts to feed Braden with yogurt and real fruit. Just to keep it as healthy as possible and still keep his weight up. Today I made Braden a pizza with zucchini and broccoli puree. You couldn't even taste the veges. So that is a nice trick I learned from the Sneaky chef. :-)

Braden has been officially approved to start preschool March 29th. We are very excited. I am teary over it because I cannot believe we are this far in Braden's life. When you think your child may not live till tomorrow, that he may never walk or talk ... your mind never allows you to see them going to preschool. It's always been one day at a time and so this is a huge adjustment. Not to mention I have been home with him since day one of his coming home from the NICU. I think I will have some huge seperation anxiety. I am thankful though that this day is so close and that he can sprout his little wings. I know Stephen is over joyed as well to see our little man grow and continue to enjoy LIFE. Grayson will be a huge help to me as I will have him while Braden is away. It'll be nice for Grayson and I to spend time... just the two of us. :-)

Grayson is doing really good. He is walking with his Lion walker. He is still not showing much interest in self feeding and meltable foods. :-( But he is eating his baby food purees and loves his milk. The other day Braden threw a cinnamon graham stik on the floor. Guess who ate it? Yup Grayson... his first real attempt to eat something other than baby food. I told Stephen I should just set up a picnic on the floor of the kitchen and then our boys would eat. I really believe it's true because this morning Braden found a cinnamon stik on the floor before the dog did and he ate it. lol Boys they are something else.

We have also been without a computer for several days. So that is part of why this post was typed early last week and now being finished today. Today I have picked out our T-shirts for the March of dimes March for Babies walk on April 17th. We are really excited about the walk and the chance to remember Kaleigh and Honor Braden and all the other little miracles we have seen and know.

This post is a little choppy because it's been a while and I am trying to think of all the things we haven't shared. Braden is eating like a normal toddler and hasn't been tube fed in two days. :-) I am hoping he will continue to do well. He has gained 9 ozs in two weeks. This too we hope continues... I really hope he will be at least 26 pounds at our next meeting with GI and the Nutritionist.

Braden and Grayson got a visit from cousin Miranda and Aunt Paula this weekend. We also get to see Aunt Leslie tonite and tomorrow. So I'm sure we will be busy. The boys are really active and love to be outside and I hate this weather is so crazy. Rain one minute cold the next and the warm again and more rain. Not enough days of sunshine lately to take them out and have fun. I guess that's it for now... Sorry no pics... I have to learn how to download to this computer. That will take some quite time which isn't easy to get these days. :-)

Our visit with the ENT and other stuff

2011-03-01T18:16:00.000-06:00

So we had our visit with Dr. Wootten today and he actually had a different plan than expected. He scoped Braden again while awake and had the speech pathologist assist in an office swallow study. I didn't even bring in Veggie tales for poor Braden but as usual he was a trooper and they were able to get what they needed. Dr. Wootten's originally conversation with me about the procedures he could do have not changed. However, he is not going to do anything at this time. He explained that Braden's voicebox, vocal cords and airway will never be exactly like ours due to the vent and being born sooo premature. So because of that Braden's body will have to learn how to compensate for the abnormalities created by his prematurity and the damage caused by being on the vent. They want to give his body time to mature and also adjust to his major airway reconstruction surgery. If in time Braden is still having difficulties then surgical intervention may be done. We also discussed Braden's lack of speech. Dr. Wootten gave us a referral to meet with a Developmental therapist. Just to be sure there isn't anything going on that we have missed.

Our next appt. with Dr. Wootten is on March 28th. Bummer in a way because that was suppose to be Braden's first day of Preschool. But that's ok he can start on the 29th. Braden is going to have another scope and Dr. W is going to inject one of his vocal cords with something that will help Braden make louder noises. Maybe if Braden realizes he can make sounds he will start making an effort to talk.

First report on Swallow study and Upper GI study

2011-02-24T21:23:00.000-06:00

Initially Braden was schedule for an esophagram. The Dr.'s decided they needed a little more detail. So Braden had an upper GI study instead. The initial report on this study is that Braden does not have a hernia. Hooray!!! His nissen is still wrapped and doing it's job. Hooray!!! The bad news is his nissen has moved above his diaphram. Which could potentially mean another surgery to fix. We won't know till sometime early next week after the surgery team and the GI team have met to discuss.

Braden's swallow study shows Braden is aspirating on thins. :-( Which is a bummer because obviously weaning has come to a halt. We have already discussed what Dr. Wootten would do to fix the aspiration issue. We just have to wait till Tuesday to find out if the plan is still the same and WHEN fixing the issue will occur. So all in all not too bad of a report.

Braden was super tired today. He refused to take a nap yesterday, went to bed later than usual, and got up at 6 am. So he was cranky for both his Special Ed. teacher and his PT. He didn't even last through his entire PT session without falling asleep. Poor baby... so we were very happy that he did so well with his Radiology visit today and did everything that was asked of him.

As soon as we get additional info. on todays results we will let y'all know. Thanks everyone for your continued support.

The boys have a new best friend

2011-02-21T11:12:00.002-06:00

A one year old boxer named Briley. She is an amazing gift and such a sweet doggie. She is loving our boys and they love her too.

Please don't forget to contribute to the March for Babies in Memory of Kaleigh and in Honor of Braden. We haven't set a lofty goal just $200. I wanted everyone to know that even a gift of $5 or $10 can make a difference for babies like Braden and Kaleigh. Our hope is that future micro-preemies will have a greater chance of survival. So that families like ours will not have to suffer the loss of a child. So that babies like Braden will have a much easier road. Our babies March for babies webpage: http://www.marchforbabies.org/bradenandkaleigh. Thanks so much for your support.

Braden supporting the March of dimes while still in the NICU.

March of dimes walkers

2011-02-18T07:25:00.003-06:00

We would love to see as many friends as possible come walk with us for the March of dimes in Memory of Kaleigh and in Honor of Braden. An added bonus is we are doing this walk as a family. So those who haven't gotten to meet Braden or Grayson this is your chance. :-) Once I know how many walkers we will have I would like to get custom t-shirts. So the sooner you sign up, email or send a message on facebook and let me know you want to walk the better. Then I can order shirts. Not sure of the cost just yet. I will let y'all know asap. Thanks so much for everyone's support.

Please come donate/walk with us on April 17th for Kaleigh and Braden at March for Babies!

2011-02-18T06:06:00.002-06:00

Change of plans

2011-02-17T16:21:00.000-06:00

We have a reschedule on the Esophagram. The Dr.'s have decided that it would be a good idea to do both the Esophagram and Swallow study at the same time. I am so glad. So we are going next Thursday. :-) Hopefully, by then Braden will be comfortable with drinking again and they will be able to see everything they need too.

Weaning is a slow go...

2011-02-17T11:16:00.000-06:00

Well weaning is going ok but not as well as it has been. The gagging has started and I am a little concerned. I will be glad to see what the esophagram shows so we can ease up on those concerns. I just hope Braden will drink. He hasn't wanted to drink since his drainage started two days ago. We think it must be allergies since he has been on an antibiotic for a week now. So today I am giving him some Zyrtec to see if that helps. I am also tubing all his liquids during the day. He started gagging earlier and was barely into 3 bites of his sandwich. Which is unusual for him. He hasn't had that problem in a long while. The drainage must have caused some additional irritation that is keeping him from eating as well and drinking. So giving him liquids during the day thru the tube and the Zyrtec will hopefully make him feel good enough to drink during his esophagram tomorrow. We shall see... but for now we are suffering from a setback. Which I'm sure there will be more to come. I say that because many of the blogs I am reading about weaning have shown ups and downs and some kids take a very long time to get completely off the use of their tube. On a good note though Braden has gained 7 more ozs since his Ped visit last week. It's a big surprise since he hasn't eaten as well and has been sick. But we are glad to see it anyway and hope that he will at least maintain it during this setback.

Enjoying a beautiful day while it last....

2011-02-16T17:19:00.000-06:00

Quick update

2011-02-16T08:34:00.000-06:00

Braden has his esophagram on Friday to check his hernia and nissen to see if it's still in tact. We won't have results until Monday or Tuesday of next week. I will post once we have details.

Here is a cute video of Grayson saying Momma.... :-)

Ok I'm back... lol

2011-02-11T17:44:00.000-06:00

Grayson is not running a fever however he and Braden are chewing on the same toys. So I am worried it's only a matter of time before Grayson is sick too. I am doing my best to keep up with the germs but you just can't control everything. I think we have learned that all to well over the past 3 years.

Prior to this illness Braden has been doing great with his Wean. He eats really well and has increased his drinking to 12-15 ozs per day. However, when we weighed him yesterday he has only gained 3 ozs since Jan. 12th. Which is confusing to me because I know I am feeding him alot more fattening stuff than I was prior to this whole weaning event. Braden is very picky and so is little brother so I bought a cookbook for kids called "The Sneaky Chef". I was really surprised how simple it is to sneak veges into your child's diet. So I am anxious to try some of these tricks and recipes. That will happen hopefully next week after this next grocery shopping trip.

So that's what we have been up to lately. That and I have joined several groups as well as make up my own for feeding and getting Braden off his tube feeds. For those of you who may be getting help from the website the group I created is on Facebook. It's called Gtube Mommies - road to eating and drinking. It's just a group sharing info. you do not have to friend anyone to join the group. Currently we have 28 members.

Below are some new pics and all the exciting advances that Grayson has made are captioned. :-) Enjoy!!!

Grayson got his first tooth this week :-)

Braden loves his Pizza and brother loves to play with Braden's feet. lol

Grayson enjoying watching the snow fall.

Braden enjoying the snow.

Grayson is into everything :-)

Grayson is standing and cruising furniture now. He is getting so big.

Strep :-( boo

2011-02-11T17:26:00.000-06:00

Well I haven't blogged in a while because I have been so focused on Weaning Braden. It's a lot of work doing his meals and making sure he eats. I have been very stressed trying to do all this and I have finally started to level out. Then Braden gets sick. Yesterday he had a fever of 101. Braden never gets a fever so I knew something was up. Then he started laying around and was not his usual self. So I called the Pediatrician and we got in. They tested for RSV, flu and Strep. He has Strep. ugh!!! The good thing is we caught it early and I think he's going to be fine. He is already doing much better today. No fever and alot more active. He has actually eatten although he is still not drinking. Which who could blame him. I don't eat when I have strep or drink much either. And as I type Grayson just had a huge vomit. So be back later...