Not so memorial memorial day

First of all, let me say a big thank you to all those who serve and have served in the armed forces protecting our country. This is your day and my family is so thankful for all you have done..

So far our Memorial Day has gone like this ( and its only noon) I started coming down with some kind of wicked head cold a couple of days ago and today it seems to be getting the best of me. Nonetheless, I have to work today so I am in sucking it up mode and trying to get out the door when I notice on of the car doors is standing wide open.. I think to myself.. Did i really leave the door open all night?? and then upon further investigation, I notice that on the two other cars we have, the doors are open on them as well.. Yep you guess it, somebody walked up, got into our cars ( which were unlocked) and helped themselves to a DVD player and a bible cover... The DVD player I get, but taking the bible cover off of Allison's bible and leaving the bible behind..... Having a little trouble understanding that one... They would have benefited from taking the Bible along with the cover... Who steals a bible cover???

Call the police to file a report which makes me late for work and then I get the call from work that Allison,who took off today to spend with the kids is home vomiting and needs me to come home and help with the kids... This is not what I had envisioned for our holiday!!

Allison is sleeping now and hopefully she will wake feeling a little better.

Tomorrow we head to Huntsville for an EEG. Its been a while since we have had one done and his Neuro wants to see if there are any changes. His seizures have been a little different as of late. Some of them are harder and instead of the very brief head dropping and arm flinging up, they are holding on a little longer and leaving him a little dazed looking in the eyes at times. Hopefully we can get some answers as well as a new direction. We've been on this current drug therapy for a while now and We think its time to scrap what hes on and move on to something different as we are seeing no results.

Please pray for us tomorrow as we head to Huntsville ( DVDless mind you) and that we will get co-operation from Dawson during the EEG. We need a change for the better and are still very prayerful that God will intervene and slay the seizure monster.

Our love to all and thank you for checking in on us

Jeff

Dawson dancing

Brace yourself... Dawson knows the stanky leg.





In other news..

Madison graduated preschool this week. We are so proud ( as you can imagine) of this little girl.. Allison and I talk all the time about how she got the best in both of us ( whatever thats worth lol ) ... What an amazing little girl she is. She is so incredibly smart and witty. She has a heart of gold... She is just a really really special kid!!

Seizures?? blah!!! about the same. Good days, OK days, and bad days.. No rhyme or reason to them. One thing that's a little concerning is that some of them are starting to hold on a little longer. Body stiffens, eyes glaze over and not that I care for ANY seizures, I really don't like these!! Other than that, our little hero is doing OK all things considered. This month is seeing improvements in speech. Nothing major, hes not learning and saying new words in leaps and bounds, BUT he is saying new words and the words he already knows are very fluent now and hes really communicating very nicely when it comes to basic things he needs. Hes also showing some good signs of being ready for potty training ( which we've started) He goes off to be by himself to use the bathroom, takes his diaper off immediately after peeing in it... things like that.. Soooooooo hopefully we will be doing some serious potty training soon.. Come on Dawson you can do it!!

So we continue on, waiting, hoping, and praying. Thanks to all of you who pray for us

Jeff and Allison

some pics of Dawson

Things around here have returned to at least some type of normalcy. Ashlyn is following in her sisters footsteps with controlling her diabetes and continues to show off her bravery. ( the picture above is Ashlyn and Katelin featured on the front page of our local newspaper. There was a nice article about them and dealing with diabetes) I have been such the proud daddy and showing them off to everybody i can think of.

Not much change in Dawson unfortunately. He is progressing, but at a VEERERRYYYYY slow pace. But progression is progression and well take it. Not satisfied, but well take it considering the alternative. I have to keep reminding myself that although this year has shown there are some delays, he is still a walking, talking miracle to me. When you think about the statictics and what he SHOULD be like..... He is still a miracle. He has numerous seizures daily and his two biggest delays are speech and social/behavioural issues. Other than that, you could never tell anything was going on with him at all. We still pray constantly for God's healing hand to touch our son and heal him of these seizures forever.. My faith tells me that one day will happen. The peace he gives us while we wait in indescribable. Sure, there are frustrations, setbacks, and even anger sometimes that we cant do "normal" things like going out to eat, going to church, going and watching the girls play softball, even going to Walmart is an issue because of the behavioral issues. But underneath all of those emotions, lies peace...

Were not sure what the next steps are for Dawson. The preliminary diet his Neuro put us on seemed to make seizures worse. I know that makes no sense, but the numbers tell the story. I know they made his behavior worse because now he couldnt eat all the things he wanted and Dawson doesn't do anger well.... at all!!!!

Please continue to pray for us as we continue to muddle our way through this horrible seizure world and all the nasty stuff that comes with it.

Pics above are Mommy and kids on mothers day and some pics of Dawson with his hat. He has started to love wearing hats
( as long as he can wear the backwards) what a cutie huh???

Thanks for the love and prayers

Jeff and Allison

Resiliency

Just amazing how resilient kids are. Way far more than I am now a days. Just one week ago, Ashlyn was lying in a hospital bed recovering after being life flighted to Vanderbilt Hospital. And today, not only is her ravenous appetite back, eating us out of house and home, but today we resume horseback riding. Watching her ride today really made my heart smile because I know how truly happy she is when she is riding.



Congrats Ashlyn for not only recuperating so quickly but for being so very resilient!!

In other news......................... wait for it..........................

Mr Dawson slept in his new bed, in his own room, and just did fantastic!!

Since Dawson no longer has clusters seizures after waking we decided wed go buy him a bed, put it in his room, and see how it goes. He has been sleeping with Allison and I every night since the seizures started at two months old. His seizures were Always centered around going in and coming out of sleep so we have always kept him right in our sights so we can monitor and count seizures.. My bed felt a lot bigger last night without Dawson in it.. YESSSSSSSSS!!!!!!

Hopefully he will continue to do well sleeping in his room. He only woke up twice last night which we thought was pretty good for a first time. Seizures continue to be awful. Yesterday was a not so good day as by the time he went to bed the seizure count was up to 16.. Please continue your prayers for this beautiful kid. He is so amazing, and he too has shown incredible resiliency. Is it obvious were proud of our kiddos??!! ha

Our love to you all

Jeff

New direction

First A quick word about Ashlynn.

She is doing remarkably well. Her blood/sugar numbers are still running on the high side but they are working on getting her insulin doses dialed in.. Its a tricky game!! the big thing is that she is giving herself her own shots. and has been since about day 3 of her diagnosis. I can't even begin to try to explain with words how PROUD of her I am. I sat in awe the other evening at supper as she prepared her insulin pen, and then injected herself with insulin in her stomach.. I never in a million years thought she would be doing that this early in the game... She is a brave and she is strong

Katelin continues to do really well with her diabetes management as well. Proud of both of those girls

Now on to Dawson..

I would love to report that since starting the modified version of the modified Atkins diet that we have seen remarkable changes in seizure activity. The truth is that if anything they have gotten worse.. Very very frustrating to watch this go on and not get any better no matter what you do. We are so ready for a break from seizure. His development has come to an absolute standstill and its just heartbreaking.

The other evening at dinner, it hit me just how crazy our lives are getting to be... Katlein was eating one thing and we were trying to figure up carbs for her... Ashlyn was eating another thing and we were busy counting and figuring carbs for her... And then Dawson was having a seizure now and again in between all that.. Counting carbs, units of insulin, and seizures....

WHEW!!!

But we made it. we survived. Thats what we do around here. This is our New normal and although we don't welcome it with open arms we DO look forward to seeing where God will take us with this.. What an adventure!!

3 of my kids are fighting a battle that requires their attention every single day from the time they wake, until the time they sleep. Probably for the rest of their lives. But tonight, my kids are healthy in spite of it all.. And for that I praise God!!

Your thoughts and prayers for my family over this past week are much appreciated.

We love you all

Jeff

Ashlyn

What a 24 hours!! I'm exhausted, i am mentally and emotionally drained, behind closed doors ( and once on the side of the road) Ive cried buckets of tears and for tonight all i want to do is sleep.

Ashlyn had been sick for a few days, went to the doctor with a bad looking throat and tongue and was being treated for strep throat. She was even a little puny when she was over here with me this past weekend but not much to worry about. I got the call Yesterday morning that Ashlyn was being admitted to the hospital here locally due to dehydration... Sounded a little odd because she had only thrown up a handful of times over the past few days.. I went to see her on my lunch break yesterday and what I saw laying in that hospital bed didn't even resemble my daughter.. She had lost a lot of weight ( and shes already a skinny girl) her eyes were sunken, her cheek bones poking out, she could barely keep awake, she was breathing very heavily and if I have ever seen a sick sick child, this was it.. I visited for a bit and headed back to work... Knowing in my gut that something was severely wrong with her... You just don't look that sick because of a virus, or strep throat... I was on my way back to work when i got the call..

Her blood sugar was 916 ( normal blood sugar range is 80-180) and she was in Diabetic Ketoacidosis. I was told she was being life flighted from our hospital to Vanderbilt University in Nashville Tennessee...... I never ever expected this... Most of you already know my 8 year old Katelin is in her second year of living with Type 1 diabetes and now the thoughts of Ashlyn having to endure this were just completely overwhelming for me... Infantile Spasms, and two diabetic children??? are you kidding me!!!!

Ashlyn had probably already arrived before I was even able to leave town and her mom was en route as well.. I know what she looked like before she left, and I could only pray she would make it to Vanderbilt in time to get help... Instantly the phone calls and prayers started flooding in as word spread through our network of family and friends and God delivered her safely and thank you to the wonderful people at Vanderbilt who has been taking wonderful, top notch care of her.

When I arrived, she was in PICU and they were busy stabilizing her and already had her on and insulin drip. Her blood sugar was in the 400's and they were busy getting her fluids and getting vitals back within human limits again. By the time we went to bed last night her blood sugars were back within normal ranges and this morning when I saw her she looked just like my Ashlyn again.. Feeling better but still very tired and weak.

Tonight she was taken out of the PICU unit and placed in a regular room with plans on coming home tomorrow with a new friend for life....... Juvenile Diabetes. Please pray for her and its slowly but surly starting to sink in with her whats happening.. This is going to be difficult for Ashlyn and all of us. A very big pill indeed for an 11 year old girl to swallow. She has been taken off of her insulin drip and started getting her shots today.. She will get insulin injections at every meal and at bedtime.. I have to be honest... I never realized just how tough Ashlyn is. This past 24 hours she has shown incredible bravery and toughness and although we all are sorry she has to endure this, we are at the same time extremely proud at how hard she fought and how well she is doing..

I had a very long talk with God during the trip alone to Nashville and I have to say that i was not very receptive at all to this new journey, this new path. I don't understand it, I don't get it at all. Why my family?? why my children?? I feel as though Im being drug out to deeper waters and i didn't even have time to grab a life jacket... Another lesson in faith?? trust???
Another attack from the enemy??? Lots to process!!

Tonight i am thankful to God for restoring my daughters health.. I pray that she will learn through this,to lean heavily on him during the difficult times she is sure to face. Thanks to all of you for your thoughts and prayers for Ashlyn and my family as we begin yet another adventure

Jeff

Three out of Four

Today Jeff's oldest daughter, Ashlyn, was diagnosed with Type 1 Diabetes. They are at Vanderbilt Children's Hospital and I will be joining them tomorrow. Please pray for Ashlyn and for my dear husband, this is the third out of four children to be diagnosed with a serious disorder. He is emotionally drained and feeling a little overwhelmed. Ashlyn is doing better and should be able to leave on Saturday. The families are well versed in the care of a diabetic child, so that gives us a little bit of an upper hand. We turn to God for guidance and strength during this difficult time and just ask for your prayers. Thank You for your love and support.

Allison