A Very Happy Day

The past 3 days have been truly wonderful. The kids have been great. Learning all sorts of new tricks. Being silly. Laughing. Playing. Sleeping. Doing all the things normal siblings should do.

I've been able to sit back and watch the kids--BE Kids. After all the stress and tribulations it was nice to sit down and watch the kids play with each other and to hear them laughing as they played. Especially nice with Sebastian who is really back to normal for the most part.

Sebastian is actively holding his bottle with 2 hands. He is banging 2 spoons together. He is beginning to use his right hand to feed himself Cheerios and other food. Rachel is almost walking. She's only a few days or a couple of weeks away from walking on her own. Sebastian will most likely be about 3 weeks behind her.
Austin is making up stories to tell us and talking in more complete sentences. He has decided that all little kids are his friends.

We are just so blessed. We've just about burst with joy several times watching Austin play with Sebastian and making Sebastian laugh. I'm constantly giggling as I watch Sebastian and Rachel steal each other's toys, food, etc. and then exact their revenge on the intruding party. Which usually means that the offending sibling is sat upon and their food or toy is removed in the same fashion.

We've had a normal, crazy week and it was wonderful. I won't dwell on the negative things still plaguing us but will rather bask in the silliness and happiness that is 3 babies playing and laughing with each other.

Have a wonder weekend and don't forget to laugh.

Progress Report

Sebastian is doing amazing. He is just surprising us at every corner.
We have just completed 2 weeks of therapy and Sebastian continues to improve.
He can crawl, pull up to standing, open and close his right hand. He will bring both hands to mid-line and will actively hold his bottle with 2 open hands.
He is laughing more.
Talking more.
Getting into mischief more.
All of these things he was not able to do 2 weeks ago. (Ok. He's always been into mischief especially with his accomplices Rachel and Austin.)

He still gets upset very easily and it takes him a bit longer to calm down but he will play by himself or with his brother and sister depending on his mood. He is still a bit clingy with Mama but we chalk that up to his age and less to his injury. He was always rather clingy.

The therapists are working with him to try and get him crawling on all fours and teaching him to walk. All of these things he was NOT doing before the accident. All new tricks that he will need to master.

He looks great. Rachel and Austin are looking great as well. They seem to be slipping back into their old routines. Austin still mentions that Sebastian has an owie. Whenever Sebastian cries, Austin states that Sebastian needs to go to the doctor or to the hospital. I'm sure that all this will eventually fade from memory but probably not until we are through with Therapy.

The therapists don't think that Sebastian will need all the therapy originally planned. He is moving quickly and recovering at light speed. That is very encouraging.

I will post some pictures of Austin, Rachel and Sebastian in the next day or so just so you all can see how happy these kids are and so that I can have witnesses to the cute and silly that has over taken our house. Weldon and I are surrounded by cute and silly and some days you can't help but laugh all day. These are the good times we treasure and there will be many more to come.

Finally A Visit

Yesterday we had our first CPS visit to the house in almost a month. Our initial social worker dropped by to tell us that he had closed out his investigation and was transferring our case over to another department. When the new social worker is assigned, they will call us and set up a meeting with us to go over our case and discuss what steps we will need to take in order to have this situation finished and closed out and our kids back home with us.

So now we wait. We wait for the next meeting. We wait to find out what kind of "services"we will "need to take advantage of" in order to get our kids back. This basically means we will need to take parenting classes and protective parenting classes so that we can be taught how not to injure our kids. We will most likely have to get a psychological evaluation before this is all said and done.

I'm not really sure how to react to all of this news. Weldon and I will do whatever it takes to get our kids back. Even if it means being humiliated and belittled by the very agency that has ignored us up until now. They were so concerned about the safety of our kids that they never checked up on us. Never interviewed anyone close to us. They basically formed an opinion based on 1, yes 1, doctor's opinion after a 10 minute exam of Sebastian that did not include any kind of medical history other than his current injury.

In the meantime, Weldon and I are still not allowed to be alone with our kids. We still have to find somewhere else to sleep at night. My parents have to remain here in Austin with us indefinitely at this point. (They love being able to spend time with the kids but the not knowing is really beginning to get to them. ) Weldon's parents give up their weekends to come down and help my parents out, so that they can get out and take a break. Then of our parents are taking care of an aging parent, so my family has to make sure my 92 year old grandfather has someone at home to take care of him and Weldon's parents have to make sure that his 86 year old grandmother is getting the medical care she needs. We are thankful for their continued Love and support and help. We have the most amazing families.

We have no idea how long this next phase will take but hopefully we will get some of these restrictions removed very quickly. I don't have any real hope that it will be a quick resolution. Nothing CPS does is quick, unless of course it's taking your kids away. Then they are moving at lightning speed. They say that they are an agency devoted to keeping families together but I just don't see how that is possible. They are overworked. Understaffed and inadequately trained. They also don't have any motivation to return kids to their families. Their main motivation as far as I've seen is to take kids out of situations, not get them back to a normal existence.

The system is broken and I don't think that there is any hope to being able to fix it. The problem is a National issue and the only time people care about this issue is at election time or when some poor unfortunate kids is killed or lost while in the system.

My heart breaks for every family that is having to go through this nightmare. It's more common than anyone thinks and none of us are really safe. All it takes is 1 doctor saying that an injury was caused by abuse or neglect and you find yourself lost in the same system that is supposed to help keep families together.

Getting back to normal

We have been home for a week and in that time we have seen Sebastian make some incredible progress in his recovery.

He is crawling, easily. The boy is fast but not as fast as his sister.
He is pulling up to standing, using anything that is within arm's reach.
He is trying to cruise and walk. Scary for mom and dad who can't stop hovering.
He is using his right arm pretty easily.
He can climb the stairs again. Oiy! What's a Mama and Daddy to do.
We are working on getting him to use his right hand more but he can now grab items with that hand.

We have started the whole Physical, Occupational and Speech Therapy gauntlet. We'll be going to the hospital 2-3 times a week. The goal will be to get Sebastian to move his right arm with better control and purpose. We are also hoping to get him back to his very talkative self.

I think that having Rachel and Austin around has been a big part of Sebastian's recovery. They don't slow down for him so he is forced to try and keep up with them while they play. He still gets frustrated when he can't get what he wants fast enough but all in all he is doing much better.

We are now starting the crazy rehabilitation process. I have doctor's appointments set up all over the place to check up on Sebastian and his progress. We have a follow up MRI and a visit with the neurologist for late August to see how Sebastian's brain is recovering and to see what kind of permanent damage he might have. We won't know for years if he will have any kind of learning disability, which is one of the potential side effects of this kind of brain injury. Based on what I'm seeing now with Sebastian and his daily interactions, I don't think we will have any major problems. So we will have to track him as he starts going to school.

All in all, Sebastian is doing great. He improves everyday. His old personality is beginning to shine through and we are working at getting home to be as normal as possible.

Every day is something new. Everyday is another day with our whole family.

First Week Home

Well, it's been one whole week and we are all still getting used to being back home. The kids are getting back on their schedules. Sebastian continues to improve. He is crawling all over the house. He has managed to pull himself up to a kneeling position on a regular basis and if he is at the stairs he can pull himself up to standing. He's not able to crawl up the stairs yet but that doesn't stop him from trying. We have noticed that he uses his right arm and right hand trying to climb the stairs, so everyday we let him crawl to the stairs and try to go up them.

Next week we go through speech therapy, physical therapy and occupational therapy. We'll see how that goes and how Sebastian tolerates 3 days of therapy.

It's a slow process. Recovery that is and we've just begun this journey. Some days are better than others. Sebastian is still having trouble sleeping at night. He's still adjusting to being home. The injury to his brain has also changed Sebastian's personality just a little bit, he's more emotional. We are still recovering from the stress of the hospital. Sebastian still wants to be held all the time but hopefully as he continues to recover he will re-gain his old independence. Luckily he still smiles and laughs easily and reminds us just how far we've come in the past 20 days. It's hard to believe that's only been 3 weeks. It feels like a lifetime ago.

Therapy

Sebastian had his first Physical Therapy and Speech Therapy Sessions today. I'm not really sure what the Physical Therpist was looking for but she mentioned that we would have a lot of work to do. She said his transitional movements needed work. Ok but she never let him transition from position to position. She always helped him. She mentioned that his skills were scattered and that we would need to get the Occupational therapist working with him. I don't think she got a good feel for Sebastian or his abilites.

I should mention that in Sebastian's medical files there are notes everywhere that state his injury was caused by "Non-Accidental Trauma" or NAT. This is not true. This of course causes most medical staff to jump to conclusions and assumptions and of course leads to biased help. Then again I could be reading the whole situation wrong and she was just ticked off at us because we were a few minutes late. Not our fault but how do you explain to the therapist that the hospital is worse than the DMV when it comes to processing some simple paperwork. We sat there for several minutes with NO ONE in the admissions windows or even on the floor waiting to be called up so that we could finish the registration process.

I've had enough of the hospital and the judgemental people who work there. I'm tired of having to defend myself everytime I go in there to get my little guy the help he needs. I'm tired of having to fight with medical personnel to ensure that they give Sebastian the care he deserves regardless of their feelings about me or the situation we find ourselves in at the moment. I am beginning to see why so many people in this country hate hospitals, nurses, doctors and anything to do with the medical field. It's sad to think that people who are supposed to help aren't more empathetic to their patients.
Ok off my soapbox and more about Sebastian.

The Speech Therapist was better. She did an evaluation of him and then explained what she saw developmentally. Sebastian is not far off the 9-12 month developmental track. He's pretty much where he should be Speech Pathology-wise. He is a slow talker just like Austin was at his age but he's not developmentally behind.

She explained to us that Sebastian's brain is still in the healing process and that the most healing occurs in the 6 weeks after surgery or injury.(We are in day 19 of this process) She told us that therapists now begin working with patients during this period of recovery or as soon after the injury as possible in order to maximize the benefits of therapy. They used to wait until the patient had gone through most of this 6 week healing time period to see how much they recovered and then design a therapy program after they saw how much the patient had recovered. Instead, they now feel that beginning therapy immediately helps the recovery process. She also mentioned that the brain would continue to heal itself for at least another year or two and that science is finding that this slower healing can continue for even longer periods after the injury.

So, I now understand better what the Speech therapist sees in Sebastian. We have goals set up for Sebastian and we have a schedule set up for him. I don't know what the Physical therapist is thinking and we didn't really set up any goals for Sebastian this time. We'll see what happens next.

I am bound and determined to get Sebastian fully recovered and if that means learning physical therapy techniques on my own and working with him at home then so be it. I have 2 beautiful little helpers,Rachel and Austin, that aren't going to cut him any slack and Sebastian is bound and determined to catch up to them.

Oh yeah did I mention that Sebastian is crawling. Not as fast as before but he can get around on his own. Go little man go.

Home

Sebastian is doing better. He continues to improve. He is using his right arm more and more. He is becoming more aware of his right hand. All great news. For the first time in several weeks Sebastian and I got several hours of sleep. It was nice.

So after a good night's sleep, the doctors then came to tell us that we could go home. We played the waiting game all day but we finally got our discharge papers yesterday and got to take Sebastian home. Of course as with all bureaucracies we were told "yes. You're going home today." and then "no. You're going home tomorrow. We are waiting on the insurance authorization." Yes. No. Yes. No and then finally Yes.

The worst part of Sebastian's discharge was that he had to be discharged to one of my parents. Sebastian is now in voluntary placement with Rachel and Austin. I feel like the State is trying to systematically remove our parental rights from all of our children. It's not fair. It's hard on the kids but hopefully now that we have Sebastian home things will be less stressful for everyone.

So for now we are out of the hospital and the kids all get to sleep in their own beds and get to wake up and play with their siblings in their own house. We are on the road to getting back to normal. I hope it's not a long and winding road.

The Glass is Half Full

The last couple of days have been a whirlwind of activity. Sebastian was moved to a regular room. No more constant monitoring. Conclusion: He is getting better.

He had a ton of tests done Monday to see how he is progressing. He has passed all of them. Our big concern was his ability to eat on his own. He passed the swallow study and we have been able to feed him. I have been able to nurse him and that has done wonders for both of us. Breastfeeding really is such a miracle and has been very therapeutic for both Sebastian and myself. Sebastian is also eating baby food. And eating quite a bit. He is almost back up to his pre-accident levels. And let me tell you... That's a lot of food. All of this is very encouraging.

There is still some weakness in his right hand and arm. He's not using it as much and that is worrisome but we hope that with physical therapy he will be good as new.

He is laughing and starting to flirt with the nurses. That's our little boy. Always looking for a pretty lady to impress.

We still have other issues to deal with and don't really know how that is going but it's just one day at a time. And each day we get through means we are that much closer to bringing our little guy home.

Rachel and Austin really need to have their brother home and they need to not be in a hospital for a very long time. The stress of the situation is beginning to show on them. But they are great kids and once we can get Sebastian home and get back to "normal"...Sort of. I think they will get better and forget all about this time and the stresses of the situation.

So for now, things look good. Sebastian is smiling and laughing and proving that medicine still doesn't know a lot about the brain and especially children's brains and their ability to heal. We still have a long road ahead of us but for now... Our glass is half full and I can start to let myself hope.

How Can I Help?

This is a copy of an email I sent out and thought that it would be a good idea to post it on the Blog to make it easier for people to check in to see where they can help if they would like to help out.

Thank you to everyone for your loving and supportive emails, phone calls and notes. We are blessed to have such wonderful friends and family. Lots of you have asked this question and have offered us your help so here are the things we need help with right now. Things will change as Sebastian comes home and as things move forward but for now here is what we need.

• Many of you know that Weldon and I are not allowed to be alone with our children while CPS continues their investigation. To that extent we need people who can stay with us at the hospital and at home. No amount of time is too small. Anything to give the grandparents a break would be helpful. Especially since we cannot spend the night with Sebastian unless we have someone else in the room with us.
• We need help with playdates with Austin so that he is not stuck at home all the time or at the hospital.
• Weldon and I need a place to crash at night. We don't want to impose ourselves on one person.
• If this restriction continues for a long time, Weldon and I will be looking into getting an efficiency so if anyone knows of a cheap place to live down South, let us know.

These are the most important things we need help with right now. We are going to need more help with things like running errands and stuff later but right now just finding ways for us to be with all 3 of our children so that they are not any more stressed out by the situation is where we can use the most help.

If you can help, give us a call or drop us an email.

Sebastian continues to improve. He smiled at Weldon today. He is beginning to look more like our Sweet smiling boy.

Holding Steady

Sebastian continues to show improvement. He is more alert and vocalizing more and more. The Physical Therapist got Sebastian to move his right arm above his head and then back down. He was able to eat a few spoonfuls of baby food but is still having trouble drinking thin liquids. This is one of our main concerns and obstacles. We are hoping that Sebastian's Suck/Swallow Reflex is still intact after the surgery. If he is able to eat and swallow liquids and food on his own we will be able to bring him home sooner and he will be able to continue his rehabilitation as an outpatient. If he is not able to eat and swallow on his own we will need to move him to a 24 hour rehabilitation center in Dallas so that they can work with him around the clock. We are hopeful that we will be able to come home soon. He continues to improve and even had a few converstaions with his twin sister Rachel and his Daddy.

One day at a time. One day at a time.

This is actually yesterday's post, I was just too tired to post it last night.