Sunday September 28th Update

Hope everyone had a great weekend. Ours has been wonderful. LOUD!! but wonderful. Our house has been full of kids this weekend and 5 minutes of peace and quiet sounds like a wonderful dream to us right now. Everyone is doing great though and we are thankful for that.

Dawson has held his own against the onslaught of all the girls this weekend. He has made a fun game of chasing them through the house. They squeal with delight that he is chasing them and he squeals with delight.. well just because they are I guess.. In between the chasing, he busies himself playing intently with his toys. Stopping only long enough for food and the occasional nap. He is such a happy kid and is getting into everything. It is not very hard to find Dawson nor is it hard to tell where he has been. There is a trail of destruction from the starting point all the way to where we find him sitting. He is all boy. As i sit here telling you this, he is in here with me with one toy in his mouth, and one in each hand as well. This weekend Dawson has been standing unassisted. The other night he just stood right up and held his balance for about 5 seconds. He didn't even realize what he was doing. As soon as he did, he eased right back down. He has done that several the past couple of days and we are so thrilled to see this progress. It appears that Walking is right around the corner for him.

Katelin is still doing really well and is only requiring an insulin shot at bedtime. If anything, we have struggled this weekend with her blood/sugar being too low. She is having some lows almost every day now but she is very good about telling us that she isn't feeling right. She is usually dead on when she thinks her b/s is low and we are glad she is paying such great attention to how she is feeling throughout the day. Please continue to pray for her. She seems like everything is great, but I know there have to be times she hates being 6 and having Diabetes

Thanks for your support and prayers. We love you all & ROLL TIDE !!!!!!!!!!!!!

Jeff and Allison

Thurs. Sept. 25

Guess what??? Dawson said momma today!!!! He has been saying it a little off and on very unintentionally, just while babbling. But today he said it with purpose. So haha, no more just dada dada dada!!

On another note, I would like to mention that Jeff & I have been married 5 years today. Whoo Hoo!!! Five jam packed years that I wouldn't trade for anything. Thank you Jeff for a wonderful five years, you are a wonderful man and I am truly Blessed to have you for my husband and father of our 2 wonderful children. Your faith and support are what has brought us through Dawson's diagnosis to the other side as better parents, as a better couple and as better people. You are inspiring!! I don't want to get too mushy on the blog so.... you are the BEST and I LOVE YOU and I am so PROUD to be your wife!!!

All my love,

Allison

Video

We hope you will take 4 min to watch the video in its entirety. We hope also that you are moved by it as much as we were when we saw it. Theres not much need to say a whole lot about it. The video speaks for itself.

We love you

Jeff and Allison

Tuesday Sept 23

Dawson got his first pair of shoes this weekend. He wasn't too thrilled about them at first, but has grown accustomed to them now. We got him some high top white ones, his PT was recommending high top ones for ankle support. The shoes force him to crawl the right way and provides some extra balance for standing. He can stand alone briefly before needing to hold on or fall over.

I talked today to the coordinator of Early Intervention to see about adding in speech therapy. Dawson's Neuro said we needed to get that started since speech is an area that IS kids struggle in. She said that he was due to be reevaluated by the end of the month and after he does that we can see about adding it in. She said that the kids must show a delay to get the services, but when we met with her in the beginning, she said that he qualifies for services because of his diagnosis, even if he is not showing delays. So I will have to talk with her again to make sure what their policy is. He has pretty much caught back up for the most part developmentally, but he still has some things he struggles with. He still has left sided weakness. Maybe not weakness per say, but he still favors his right side. For example, when he claps, he brings his right hand to his left. He does not bring both of them together. When he takes steps (holding on) there is a difference in how much he picks up his right vs his left leg. Speech wise, he is supposed to be able to say about 2 other words besides mama and dada, he only says dada. He makes lots of sounds, but no other words. So, we'll see what they can or will do.

He is also starting to get in his molars. We can see and feel the bumps and he is chewing like crazy on stuff but they have not broken thru the surface yet. That should be lots of fun when they do come in. He is still all over the house and into everything. He and Madison play so well together too, it is so cute to watch them. Madison really loves her baby brother.

I would also like to take the opportunity to wish 2 sets of my aunts and uncles a happy anniversary for tomorrow, so....HAPPY ANNIVERSARY to Jim & Wanda, and Rob & Jan (married for 39 and 31 yrs respectively) We love you!!!

Thanks for checking in on Dawson.

Love,
Allison & Jeff

Test Results

Today we had our meeting with Dr. Bebin in Huntsville. She was just amazed at how well he has progressed since our last visit with her months ago. We had to wait an unusual amount of time today ( over an hour and a half) in the waiting room before we were ever called back which we found to be a little frustrating. I mean you can only keep a 1 year old pacified for a certain amount of time. Dawson did his stuff though. He was the ham of the waiting room. Crawling around flashing that little smile at everybody. It turns out though that the long wait was not in vain. While waiting, we met a family of a three year old who was diagnosed with Infantile Spasms at around 6 months old. His seizures were not able to be controlled and has now progressed to Lennox Gastrout syndrome. Turns out they are from Florence as well and his pediatrician is the same as Dawsons. Small world huh?? They have been all over the country including John Hopkin's and they said that by far Dr Bebin was the best Pediatric Neurologist they had ever come in contact with. She has been the only one we have ever been with but Allison and I both have always felt blessed to have her as Dawson's doctor. Once again, Gods hand at work.

It was so nice to actually Meet somebody who totally understands what we have been through. Over the past 10 months we have met ( online) some of the most amazing people who's children suffer from the same thing Dawson has. We have networked, prayed for, prayed with, cried for, and allowed these wonderful families to be a source of comfort and prayer for us and we are grateful for each and every one of these families. We have fallen in love with your children and pray for them everyday. How nice though, to actually get to sit and talk face to face, with somebody who has traveled the same road as us. To actually get to sit and look at this beautiful boy was such a comfort to us. You see, even though we have met so many wonderful people, and our families here have been such an amazing source of comfort and support, we have always felt..... well, just so alone. Today that feeling of being all alone went away as we talked with this courageous mom. We gave her our email and phone number and we hope to get to speak with them more often. Once again, What seems like an extremely long wait at a Doctors office, actually turns into God's hand at work in our lives yet again.

On with the test results. Basically they gave us no indication that anything is wrong with Dawson. There were a couple of numbers that were off and the plan right now is to do a little blood work to check his thyroid. But there was nothing in the report that suggested to Dr. Bebin that anything more needs to be done at this point. Its one of those " No news is good news" type of deals. There is a local geneticist that she wants to confer with and wants us to meet so we are going back in November to have an EEG ( haven't had one of those since becoming seizure free) and then we are going to meet with this geneticist and Dr. Bebin after the EEG is done.

Initially I am not at all interested in doing more testing on Dawson. It seems like doing more testing equates to chasing a ghost. So there it is, months of waiting on pins and needles and the test results come back normal( with the exception of his resting metabolic rate which may suggest a thyroid issue. )

The long day has taken its toll on Dawson ( and us) and hopefully bedtime will come early tonight. Thanks for looking in on our little guy and we love you all dearly.

Jeff and Allison

Wrestle Mania

Tomorrow is our Neuro visit in Huntsville. Say a prayer for us as we are expecting to get back some good results from all of the testing. We will make sure to pass on whatever info we get, when we get back tomorrow evening.

The past few days I have taken absolute joy in watching Dawson and Madison play. She has always been so good around him and is the sweetest little girl I have ever seen. But the past few days they have figured out how to wrestle ( ruff housing) together. Last night Dawson was literally chasing her down the hallway into the den. She would wait there for him and then he would climb up to her and almost tackle her. They have been rolling around and having the best time. Both of them squealing with delight at one another. Is there anything better???

They play so well together, and other than a couple of head butts, that put both of them in tears, it has just been plain ole fun watching them.

Dawson is just doing so well. Your prayers made that possible and we thank you so much.

Jeff and Allison

Sunday September 14th

Hope everybody has had a wonderful weekend so far. Just a quick update today as things have not changed a bit for us ( Which is a good thing.) Dawson continues to do just great. He is all over the house getting into everything hes not supposed to. He's pulling up and cruising while holding onto the furniture. He is active, he is engaging, he is learning, and he has been seizure free for 107 days. Can you believe it?? 107 days!! I still find myself to be in complete awe about that.

We have a neuro visit next week and we will be discussing in detail the findings from the muscle biopsy/spinal tap. I find myself kinda looking forward to this visit because its been months since hes seen his doctors and I can't wait for them to see how well he is doing. He has been busy playing around the house all weekend long and stopping only for a short nap here and there to recharge his batteries.

Katelin is doing great also. She is still in her " Honeymoon " phase and is only requiring an insulin injection at night. This will not last and when she comes out of it she will have to go back to having shots with every meal. We are enjoying this phase while it lasts and our efforts right now are concentrated on making sure she continues to eat well.

Speaking of eating well, Allison just found out that I can fit 10 vanilla wafers in my mouth at one time. Can anybody beat that???

We love you guys and appreciate you so much

Jeff and Allison

Are you kidding me

Yesterday Dawson had an appt with his local pediatrician. We went hoping to discuss the results from his Atlanta surgery but he had not received the entire packet of information. We received at home a 4 page synopsis of some of the results, but apparently the Doctors get the equivalent of a book on all his testing. His Neuro in Huntsville is awaiting the disc that contains all the information before she will talk to us either. Regardless, we showed his pediatrician what we had and he took the time to read the report and said there was nothing on there that he was really that concerned about. He also mentioned that some of the testing that was contained in the report was " Way out there" and that not only pediatricians, but neuro pediatricians would not even know about half of that stuff.

None the less, he was ecstatic at how well Dawson was doing ( as we all are.) He got to see him crawl, bear crawl, and even speak a couple of words during the visit. Dawson has been working on cruising lately. He has been pulling up on everything for a good while now, but now hes starting to walk around a little while holding on. How great is our God!!!!

This next thing is kinda funny. For Dawson's birthday, Allison went out and bought him a gift. It's an educational toy that has buttons and whistles and knobs and all sorts of things. Push something and the thing will talk to you and say different stuff. You get the picture.....
Dawson finally got around to playing with this new present the other night and Allison calls me into his room and says " Would you listen to this!!!" She starts pushing this button and the stupid thing will only speak SPANISH!!! ARE YOU KIDDING ME?????

Now, I refuse to use my son's medical blog to air out my political grievances, BUT do we as parents now have to read our kids toys to see what language its going to speak. ( and yes, its marked on the box that is speaks only Spanish.) Wake up people, this is America and English is our language. Nuff said

We are sorry for such the delay in this post, things have been crazy and is seems as though we run from daybreak to well past dark before anybody gets the chance to actually sit down and think about whats been going on. Dawson's progress continues at a rapid rate and we are so thankful that Doctors don't have the last word. As always, thanks for your prayers and support. We so appreciate everything that you have done for us.

Jeff and Allison

Dawson's birthday party

Yesterday we had Dawson's birthday party.  Everybody had a great time and as expected Dawson enjoyed his birthday cake.  Dawson had such a great time at his party and we appreciate everybody that came to celebrate this special day with us.  We wanted to share a few of the pictures with everybody so we hope you enjoy them.

By the way, we FINALLY got the results back from all the testing he had done in Atlanta a few months ago.  I have no idea what all the things contained in the report mean but we will see his neuro very soon and she is supposed to go over in detail what all the report is about.   We will update everybody as we find out whats what.   Thanks again for your prayers and support.  We love you all

Jeff and Allison

Dawson's first year of life

This video was Jeff's idea but I asked to do it since this song means so much to me personally. During the first few days after diagnosis, Jeff had played this song and I just went to tears. This song touched me so much during the days of uncertainty, anger, confusion, and sadness. This song made me realize that I had to turn it over to God and He would take care of everything. I then felt calm and knew that Dawson, that we, would be okay. God is in control and he is the calmer of this storm and we are all okay...Dawson is okay.

Tomorrow, September 4th, is a very special day for us. It's Dawson's birthday and as parents we couldn't be more proud. Please join with us as we celebrate his first year of life.

• When everything is wrong


• The day has passed and nothing's done


• And the whole world seems against me


• When I'm rolling in my bed, there's a storm in my head


• I'm afraid of sinking in despair.

• Teach me Lord to have faith


• In what you're bringing me will


• Change my life and bring you glory

• There on the storm I am learning to let go


• Of the will that I so long to control


• There may I be in your arms eternally


• I thank you Lord, You are the calmer of the storm

• You rebuke the wind and the waves


• Once again I find I'm amazed by the power of your will


• 'Cause I'm a child of little faith


• I feel the wind and forget your grace


• And you say " Peace be Still."

• Teach me Lord to have faith


• In what you're bringing me will


• Change my life and bring you glory

• There on the storm I am learning to let go


• Of the will that I so long to control


• There may I be in your arms eternally


• I thank you Lord You are the calmer of the storm.

• Oh when the torment blows


• The middle of the sea


• May I never trust, never trust in me


• 'Cause there in your arms I find


• No tragedy.

• There on the storm I am learning to let go


• The white wave's high, it's crashing o'er the deck


• And I don't know where to go


• Where are you Lord, is my ship going down?


• The mast is gone so throw the anchor


• Should I jump and try to swim to land?

• There on the storm, teach me God to understand


• Of your will that I just cannot control.


• There may I see all your love protecting me


• I thank you Lord, you are the calmer of the storm

Music and Lyrics by " Downhere"

Some Video of Dawson

We thought we would try to capture a little snippet for you guys to see how much hes grown since his last video. We tried to get him to do a couple of his " tricks " but of course he is going to act like he has no idea what I'm saying. Just moments before he was throwing his arms in the air, waving bye bye like crazy, and clapping for himself which is what sparked the idea to begin with. What a stinker.

He's still doing great and going strong and we are enjoying watching him just being a baby with no seizures.

Hope everybody had a great Labor Day weekend!!

Love to all

Jeff and Allison