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. :-)
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. :-)
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. :-)
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.
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. :-)
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.
This is the story of an amazing set of twins that were born 16 weeks to soon and their little brother Grayson. Kaleigh Grace who lived an amazing 13 days and we miss daily. Braden our super hero who is now 4. This is our journey in parenting with challenges above and beyond the norm.
Please donate in Memory of Kaleigh and in honor of Braden by clicking this button.
This is the story of our three beautiful children -
Kaleigh Grace - who lived an amazing 13 days and who we miss daily.
Braden John - our little 24 weeker superhero who is now 5 years old.
Grayson Paul - our youngest son who was born full term was diagnosed with Autism on Febuary 5th 2013. Although he has Autism he is high functioning and since he is only 2 1/2 and already receiving lots of therapy his progress has been amazing. If he keeps this up he might be in a regular class by the time he reaches Kindergarten.
Braden - our micro-preemie has had his share of challenges. He has had a trach, been on oxygen, hip dysplasia in both hips, nissen and fundo surgery for severe reflux, g-tube, reconstruction of his airway and has a paralyzed vocal cord. He is now walking, eating, going to preK and has Physical therapy, speech therapy and Occupational therapy both private and in the public school system. Braden is not speaking but is doing great using sign language.
Kaleigh - Our little Tinkerbell
In memory of Our Sweet Baby Girl
You live in our hearts forever... we miss you Kaleigh Grace. "When you accept what has happened, you aren't acknowledging that it is okay but rather, that you know you must find a way to keep growing and living-even if you don't feel like it...[Don't let] grief be your constant companion...Realize that your grief is born out of unconditional love for your child and rejoice in that love which will never end... Embracing life again is not a sign that you have stopped missing your baby, but an example of a love that is eternal."