Weekend Stuff

Were always looking for some excuse to eat something sweet.. Sooooooo...... Whether or not you know it, today has been deemed
" Just because I love you" day and we are celebrating " Just because I love you" day by eating a yummy cake!!

This weekend has been pretty good. Seizures since starting Banzel have been reduced to less than 10 a day where he was having double digit seizures on some days before. Not even close to where we want to be but better is better and we celebrate that. Maybe when we start doing some Banzel increases we will see marked improvement.. He is still having some of those seizures that hang on for a few seconds. I hate those and sometimes they almost knock him off his feet.. The seizures are impossible to predict so very random. I still believe that when he gets upset and has one of his little meltdowns, that that in itself can make him prone to having a seizure.. Here is an example....

He was doing fine.. the four of us were outside picking the garden we came inside to cool off and he brought me some drink mix out of the kitchen and i guess he thought he was going to get to eat it.. I told him no and asked him to take it back to the kitchen. He told me no and then started pinching me.. I told him not to pinch and he kept on. He got his little hand smacked for pinching and he goes into this huge screaming and fussing fit.. followed by a hard seizures and then sleep.... I think being that upset does indeed make him prone to having a seizure. But you can't get through the day without making him upset.. He still needs discipline, he needs to learn how to deal with not getting his way, he needs to understand how to process being told no so what do you do??? I HATE HATE HATE he has to go through this!!!

Talking is still improving praise God!! the other day at my moms he said " I'm ringing the bell" he said it again when she was over here telling me about it.. Its just unbelievable that we have spent so much time trying to get him to say two words together and here he goes skipping two and three words and going straight to the four word sentence. HA We are SO very proud of him and what he is accomplishing. We pray continuously his forward progress continues

God's hand has certainly been on him during his fight with the seizure monster. Please continue your prayers for Dawson and thank you so much!!

Love to all

Jeff and Allison

He did it!! He talked

Hes been jabbering up a storm today... as a matter of fact, hes had one of those good days that we cherish so very much...

Allison brought him and Madison to eat lunch with me today and he was a dream.. This evening mommy and daddy were trying to have some mommy and daddy time while watching some TV which makes Dawson extremely jealous... He distracted us just long enough to point to Allison's nose and then said just as plain as day... " This is my nose" what a wonderful moment!!

He finally put some words together and said his first sentence.. it seems as though over the past couple of days hes been really really trying to talk again and just earlier he was poking me and saying my daddy, then poking mommy and saying " my mommy"

We are just overjoyed!! He is finding a way to break through the seizures and the meds... Somewhere amongst the chaos in his head is this wonderful little boy... and today he's been fighting to get out!! We know he's in there and this is a huge leap for us..

We pray for more words and more sentences!! as i type this.. his talking continues on.. praise be to God

Fathers Day

Fathers Day weekend was just wonderful for me. I got to hang out with the kids, managed to get some things done that i had on my to do list and I thank my wonderful wife and kids for making the day really special for me. Me being a father is harder than I ever, ever imagined it would be. When I was younger, from the outside looking in, being a father seemed so easy. I have learned that it is one of the most difficult, yet rewarding things a man can do. Being a daddy in this family is even harder. As a dad, my natural instinct is to protect. Moms have the nurturing spirit, but a father is a protecter and a provider. Watching Dawson suffer daily.. and watching Ashlyn and Katelin have to deal with the every second of the day managing diabetes has taken a lot out of me. In a second, if the choice was given, I would take the seizures and diabetes from them and give it to myself. Like i said, my instinct is to protect and I can't protect them from this, and deep down in places I dont ever talk about it kills me. Watching them have to go through this just kills me.

But then i watch them go through this, and i watch them prevail. I watch Dawson battle through seizure after seizure after seizure. I watch him battle through wicked drugs that have awful side effects. I watch the girls battle through numerous blood checks daily, injections of insulin, having low blood sugar, having high blood sugar. Im watching these young kids go through this on a daily basis and i see how strong and determined they are. As a father i couldn't be more proud. I have four of the most incredible kids a dad could ask for!! ( and an amazing wife who keeps me together through it all)

Allison is on vacation this week and she is hanging out with the kids.. Poor thing, Dawson was really rough on her today!! He has not had a very good day today. Lots of seizures so far and VERY clingy. I dont think shes been able to get off the couch with him for more than a few minutes. We got a little pool for him to splash around in and he hates it. He LOVES taking a bath but hates the pool. Go figure. Hopefully he will be in a better mood for her tomorrow.

We talked to his Neuro this afternoon and we have decided to decrease his Zonegran. Its not doing anything as far as we can tell and I know most of these meds can hinder learning and development. Soooooo were decreasing and adding Banzel which has its own fun side effects. Dawson seems to be very sensitive to the side effects so were kind of anxious to see what happens.

We are prayerful and hopeful that maybe Banzel will be his magic drug..... we'll see

In the meantime, despite the seizures, he is learning.. It is slow but it is an always steady progress. Hes learing to count and is still saying new words every now and again. I really dont care how slow we go forward... just as long as we dont go backwards!!

God continues to bless us and i am so proud to be Madison, and Dawson, and Katelin, and Ashlyn's daddy!!

Jeff

Summer, shots & stuff

Today we took the littlest angel to the Doctor to get her shots so she can start Kindergarten. Those of you who know me already know how I feel about these shots. I have always had the stance that I do not hate vaccinations, I hate they way they are injected so recklessly and so abundantly in a two month babies. Madison has never had any kind of adverse reaction to any shot so I put my money where my mouth is and we sat her on the table so they could inject her with numerous live viruses all in the name of kindergarten.. Never even a mention of possible adverse side effects, never even offered any information as to what they were injecting.. just poke and push, poke and push, poke and push... UGGGG

ANYWAY.. thats a whole nother tirade... She was SO brave and teared up a bit, but never cried.. A stark contrast to the last time she had a shot and had to be held down by three adults. You would have thought somebody was cutting off her legs with a hacksaw last time.. Not this time though. and the reward??? All you can eat ice cream all day long today.

Our little buddy Dawson has had a pretty good summer so far. Seizure are still running rampant and some days are good with only 4 or5, and some days are not so good with seizures getting up into the twenty somethings. Almost every evening we get outside and pick the garden, pick blueberries, and catch lightening bugs and He LOVES it.. He gets out there and follows Lucy ( black lab) wherever she goes. He is definitely an outdoor kid!!

His mood continues to be pretty good as a whole. As long as nothing bad happens, he does pretty good. The only problem is that it just doesn't take very much to set him off.. Running around in the yard having a blast..... trips and falls... Party is OVER!! He has a complete come apart and the good times are over. It happens just that fast.

Dawson's sleeping is incredible and has been for quite some time. He generally goes to sleep around 9:00 and is sleeping all night long.. I remember ( and i still feel for those who suffer from this...) those spells where the kid would not sleep. Probably the most miserable we've been is during those times. Its hard enough to deal with the seizures, meds, developmental delays, and behavioral problems on a full nights sleep... Take away the ability to get a good nights sleep, and you have misery!!

God bless those of you who deal with what you deal with on no sleep.. So very thankful Dawson at least sleeps through the night. ( knocking on wood)

Thank you for checking in. Thanks for those who pray for Dawson. Please continue to pray that God will intervene and remove these seizures from him..

Jeff and Allison

Thankful for days like these

Every once in a while we get a day like this.. A day that seems like a dream. A day where our son, who is relentlessly attacked daily by the seizure monster somehow seems to turn the tide and actually beat this thing down with a stick.. Today, seizures have been very few and even more important, today the firestorm in his brain, accompanied by a cocktail of meds were kept at bay and allowed him to be a little boy.. plain and simple, just a little boy.. He has been in a great mood today and this evening. Even to the point he was able to go to his sisters softball game. We never take him because he becomes very irritated very quickly and makes these events kinda miserable.. But not today.. Today he was content to run around, across the bleachers,playing in the grass, sucking on his ring pop, and after about an hour and a half he was ready to go..

He didn't do his usual screaming bloody murder, pinching and hitting everybody in site. He didn't try to bite his pacifier in half.. He simply came up to us and said " home" as a matter of fact.. hes been talking the English language along with "Dawson language" all day long today.. Hes just been a regular kid today... We LOVE days like these and cherish them. We love the days where his true personality overcomes the seizures and the meds.. God gives us days like this as if to say.... I'm still here, Hang in there, I'm going to do big things!!

sigh...... I love days like today!!

This week has been crazy. I have been on vacation this week and have been hanging out with my three angels along with my 14 year old niece from out of town.. So me and the 4 amigos have been together just enjoying each other and doing stuff around town.. Money has been very tight so we've had to be creative in keeping the kids occupied this week.. After 5 days with 4 energetic girls I am exhausted and think my fuse is a little shorter than usual. BUT, i would not trade this time with my kids for anything.

We did finally get some blood work results from our last Neuro appointment. Dawson's levels of Zonegran in his system are at an effective range but there is some wiggle room for an increase. And since hes still having numerous seizures daily, we have added a morning dose of poison to his daily regimen. Too early to tell if its helped any but maybe seeing a slight improvement this week at times... well see how the rest of the week goes.

The Diabetes sistes are still doing well, and we continue to be so proud of how these two handle this medical condition and just because Madison is healthy, I don't see the need to leave her out.. She is doing exceptionally well and handles herself very nicely amongst the older children. That little girl is an awesome blessing!!!!

Allison and I are so thankful for those who have been praying for us over the past weeks.

Thank you Lord for letting us see Dawson today!!

Jeff

EEG news

Were still battling some bug thats been around here all week long. Both Madison and Dawson have had on and off again fevers throughout the day and yesterday evening Madison started vomiting and became very ill for the rest of the night. This morning found her feeling better and back on her feet again but the on and off again fever remains. As for Dawson, fever seems to be his biggest issue and it seems a little worse at night. Im ready to give this bug its eviction papers!!

Earlier this week Dawson had a EEG. The hookup went about as it should anytime you try to glue a bunch of stuff to a two years olds head. As for the EEG itself, Dr Bebin said his awake EEG is not so bad ( but not normal) but when he falls asleep, his little brain is a firestorm of electrical activity. She feels this is part of whats causing some of these learning delays because his brain is not resting as it should during sleeping hours... We are back to using Melatonin to help his brain relax and Im certainly not opposed to taking a snip of Melatonin at night with him... 15 mins and Im out like a light!!!

They also did a blood draw to check his levels of his current meds to make sure they are at effective doses. We are supposed to hear back from them sometime today ( hopefully)

In the mean time, she talked about a new drug that is coming out in the next 6 to 10 months. ( Clobazan) She was excited about this and said there has been a lot of success with this drug concerning his specific seizure type which she is calling Atonic/ Drop Seizures. If his levels of Zonegran aren't where she wants them, we might be adding Banzel until this new drug becomes available. So all in all, a pretty productive visit and its nice to know there is something out there that may help Dawson. I hate the med/drug game but at the same time its very important to keep hope alive!!! As long as there is a med that we haven't tried yet..... there is hope that that med will be the ONE.

God surely continues to bless us. We continue to find miracles in Dawson and our faith continues to be exercised on a daily basis. Your prayers in the areas of healing are much appreciated.

Our love to all

Jeff and Allison