The word "stable" is a good thing!

Yep! That pretty much sums up Kaden lately. Which is good! I can honestly say that in his 13 months of life this is the calmest things have been. There have been no seizures right now and the blood pressure is under control. At one time in January Kaden took 24 syringes of medication a day!! We are down to only 7 a day!! That is a blessing!!! Trying to get that much medicine down him was horrible!! We haven't even had any doctors appointments in a while.......crazy! We do see everyone though the beginning of June. We see cardiology, nephrology, neurology , rehab and audiology all in a 2 week span. Kaden has PT and OT and special ed teachers out to the house a few times a week. Kaden also started attending class in the county's special ed babies and toddlers class once a week. The special needs of the kids in this class really vary so it makes it kinda hard....plus there are no kids with CP like Kaden. I have mixed feelings on this class. I sometimes feel like Kaden just doesn't get anything out of it. And sometimes I have left there feeling horrible and devastated all over again. Its hard when your in a class with special education kids and their parents and I feel sympathetic glances come our way over and over! Yes, I know Kaden is the most complex in his class, I know he has more disabilities than the other kids. But somehow being there in that class just screams to me how bad things really are. I have alot of bad days still in dealing with this reality.......sometimes I wonder if I ever will completely except it and be at peace.
We have had to face hard facts regarding our future as a family. We are trying to prepare for the future and we know whatever is easiest for Kaden will be easiest for our family. The big topic recently is our house. We just bought this farm 3 years ago. Brandon gutted the house to the studs and we remodeled completely. But as far as assessabilityfor a person in a wheelchair goes.......its about the worst there could ever be!! There are stairs to get into the house at both entrances and there is only one bedroom downstairs(which is Kadens). So one of us slept on the couch for a full year!! Taking Kaden to an upstairs room sounds like a good idea but its not that easy. First of all no one else would get any sleep. He still is up many times a night crying and being fussy. Second of all, to take him up and down those steep stairs is dangerous. It will only get worse as he gets older too. I want Kaden to be able to have access to his brothers and sisters rooms as he gets older. With this house that is not a possibility. So to make a long story short, we are going to build! It wont be for a while though. We are planning on putting the house up for sale next year. I no longer have time for my horses or other animals. I have longingly looked out the window at them for the last year. I am still dealing with this sometimes painful truth-----life sometimes takes you in a direction you had never planned on going. But I am here and I am learning to cope in this new world!

My SWEET baby boy is ONE!

One year ago today my beautiful baby boy came into this world. Quickly taken from me and whisked away into a world of tubes and beeping equipment. Not able to be swaddled in his mothers arms for many days. Kaden has been so brave. He has had so many obstacles to overcome in his first year of life. He has been hospitalized 5 times. Thirty four days of his 12 months have been spent in the hospital and he has spent countless hours at different doctors offices over the last year. He has already had more to deal with than most do their whole entire lives. In the last 12 months my fighter has dealt with:

Meconium aspiration

Mechanical ventilation

sepsis

low platelets with infusions

supraventricular tachycardia

anemia

hypoxic brain injury

infantile spasms or West syndrome

hearing impaired (wears hearing aids)

cortical vision impairment

spastic quadriplegia cerebral palsy

hypertension

GERD

left ventricular hypertrophy

mild aortic root dilation

Kaden has changed our lives in ways I cant describe with words. He has taught me the true meaning of unconditional love, strength and courage. He has brought out the goodness in others and because of that, our family has seen an out pouring of love and support. This has warmed our hearts and inspired us to be better people. Our older kids have also learned a few valuable lessons this past year.

Life on Earth is short even though the journey sometimes seems long. We don't know what the future holds for Kaden or for any of us for that matter........ so we cherish each moment, each memory....... and know that God holds a better place for us all.

Back From the Hospital Again......

Yep!! Another hospital stay!! Just for a couple of days this time. Kaden went to the doctor on Monday and his blood pressure was 137/102. That was high enough to send us packing to our room which the doctors had ready for us at Hurley. I was kinda glad we were at Hurley instead of Detroit. I do like Detroit better than Hurley but man, it sooooo disrupts our life when we have to stay sooo far from home. Our doctors are kinda fifty-fifty. Half of them are Detroit doctors and half are Hurley doctors. We cant really help it. Hurley doesnt even have pediatric nephrologists or audiologists so we are kinda split between the two hospitals!
Our hospital stay was pretty quick. Kadens blood pressure meds were readjusted and he had a 24 hour EEG ( to check for seizures) and a upper endoscopy ( to check for ulcers, a side effect of the ACTH). The BAD news----- the seizures are back. I kid you not the very first day he was off of the ACTH we noticed some weird rolling of his eyes. By the second day I saw it happen many times. I knew in my heart they were back. I really didn't need a EEG to tell me that but I guess the doctors do. They aren't huge crazy seizures or nothing...... they just involve the eyes. Sometimes his eyes roll downward and kinda shake for a few seconds and sometimes they roll back into his head for a second and he may do this 3 or 4 times in a row. What can I say.................We tried. That medicine (ACTH) was pure torture for him and us!! And we knew it would come with a price...... but we had to try it. Other wise we would have always wondered if it would have worked. I am happy to say that with everyday he has not gotten a shot its like he has come back to life!!! We saw him smile for the first time in almost 2 months!!!! He is feeling so much better!!!! He has regressed in the last 2 months. He is very floppy. He has pretty much no head control, but hopefully we can gain some ground soon!! Nothing to do but to look ahead............... with that being said..........we are on to the last option for seizure control. The ketogenic diet. We will see the neurologist from Detroit on this soon. So until then I will take a deep breathe, and be thankfull..................thankful we are out of the hospital, thankful I am back home with my other kids, and thankful for a smile!!! And to all you wondeful people who have been cookin up a storm for my family- thank you so much! It really does help so much.

Just when I thought we were out of the woods.....

Well, we are back from a some what unexpected hospital stay. We are so close to being done with the ACTH and thought maybe we had avoided some of those potential nasty side effects. Kaden goes to the Doctor twice a week just for blood pressure checks. The ACTH can cause it to increase. I kinda thought we would never have a problem with this since Kaden was already on a few heart medications for his "SVT Past". The meds he was on already keep his blood pressure running low. But as the weeks have worn on the trend has definitely been going up. Finally a pressure of 145/95 sent him and us packing for Detroit. Cardiology said this was way to high for a 10 month old and said we needed to see a nephrologist to rule any other causes of the high bp out. All the testing showed its nothing more than a side effect of the ACTH. So the plan is to wean him much quicker off it. An echo (ultrasound) of his heart showed a moderate increase in the size of his heart since the last echo which was done in August. This leads them to believe that the blood pressures have been too high for too long. His hearts been working harder and enlarging because of it. His pressures were pretty bad the first day there. He had a few that were 160/106!! So we just had to find the right combination of meds to bring it down. Unfortunately even after the ACTH is weaned we are told the blood pressure issues will take possibly a few months to resolve themselves. So I now have to do manual blood pressures 3 times a day on Kaden. Man, it is soooo much harder to do one on a baby than an adult. Its sooo hard to hear it.
But we are so glad to be home! My furniture feels like heaven to sit on after sitting on a hard bench and chair for 5 days. Kaden was actually really good in the hospital and not to fussy so that made it easier on all of us. And thank goodness for the Ronald McDonald House! Its right next to the hospital and we can shower and have a comfy bed to sleep on. Brandon and I took turns sleeping. He would sleep till 2am then we would switch and he would stay next to Kaden and I would sleep. Its the best solution we could come up with!! Thanks for all your prayers. I hope we are not back there for a long time!!!!

I Hate Statistics!!

Well we only have four more weeks of these ACTH injections left. It has been the most trying time we have had as parents! Hands down!! Trust me I am thankful that so far its working, no seizures!! And of course I am thankful he hasn't gotten any type of infection while on this. But the crying is excruciating!! My heart breaks for him and us and the other kids! I was explained it this way the other day--- I was told athletes who take steroids suffer from steroid rage and that Kadens dose of steroids is one of the purest forms and in a super high dosage so he basically is suffering from steroid rage and has no other way to express this except by screaming. He is swollen and miserable! We are weaning him off slowly so I hope to see improvement soon.
Yesterday Kaden had a super busy day! We had an appointment with the rehab doctor, physical therapy, labs drawn and a baby massage therapist who came to the house. Brandon and I love Kadens rehabilitation doctor. He is caring and understanding. He really takes his time and listens to us. Yet at the same time I dislike him!! He makes us face reality and uses that phrase over and over " The reality is......" He uses lots of numbers and statistics. And as much as me and Brandon hate to admit it, he always shoves reality in our face and it HURTS!!!! Maybe that's what we need.......I think most of the things he tells us we already know....... but they are unspoken. We don't talk of them with each other or with others. He even briefly wandered away from Kadens health issues to talk marriage with us. Telling us how high divorce rates were for couples with a special needs child. I don't think he told us this to scare us but I think to tell us to make time for each other which has pretty much become impossible lately. But I am hopeful! I will always be hopeful and that is why I wont write down those statistics in stone and put Kadens name down next to them!! I say this but at the same time I must be realistic. I know Kadens conditions are many and the prognosis not good but Kaden is in Gods hands and has our love every single day..........that's gotta be enough.

Warning: May cause irritability!!!!

Kaden has now been on the ACTH injections for 3 weeks. The wonderful news to all this is that the seizures have completely stopped!! Yep, after about the fifth injection they were gone! The bad news...... he is completely miserable and so are we!!! The ACTH has tons of side effects!! One of the very common ones is irritability!! I don't think that word describes how Kaden feels. Not even close!! If screaming for hours and hours each day and sleeping 5-6 hours in a 24 hour period is irritability then i would hate to see what agony looks like! We are exhausted and so is he. We have had to call doctors at home over this it has gotten so bad. Our pediatrician sent us straight to the hospital the other day cause he was just sure something else must be wrong. But after all the tests were done the consensus was "irritability". We now have him on a sedative to help keep him a little calmer but this really has not done a thing yet.

Today neurology told us we had a minimum of 6 more weeks to go. I am tired just thinking of that!!! Nothing we can do but trudge forward! Kaden has a swallowing evaluation next Tuesday and then will see a speech pathologist once a week. Not for speech but to try and help get him eating better. He has low musculature in his tongue we are told from the CP. This makes it difficult for him to eat baby food. Hopefully they can give us some pointers to get him eating better.

That stuff costs how much?!?!?!????

We made it home tonight from the PICU. Everything went as planned and there were no surprises. The lab work all came back good. The echo of his heart was good and they managed to get an IV on him the first try! That was a miracle! He is a super hard IV start. At Childrens Hospital he was on a no poke list after 12 failed attempts to get an IV over 2 days. He had to go to the O.R. and be put under just for a stinkin IV! Three times too!! Anyways, the ACTH was overnighted from California and my Dad stayed at the house to sign for it. We were not able to leave the hospital till it was at home safely in the fridge. Now get this....... you may think this is a typo but its not. One vile of the ACTH costs 24,000$! I swear! And three viles were shipped to my house. Do the math.......CRAZY! Apparently this is liquid gold! This is only one months worth too! Here is the next thing I bet you are all thinking.... Did the insurance pay for it??? Yep they did. They were not to happy about it though. The nurse from the neurologists office spent hours on the phone with them yesterday. But they agreed it was necessary. Thank goodness for good insurance! This is why I grudgingly drag my self into work many nights not so much for the paycheck but for my insurance!! Super blessed for that!! Anyways, my kitchen cupboard looks like a pharmacy at this point. Who new a red sharps container went with my kitchen decor??? Its no Pottery Barn but its what I got in life right now!! So I gave the shot this morning at the hospital with the nurse holding Kaden down. In the morning its Brandons turn to wrestle him. Not looking forward to this......... but its what has to be done. We should know in a week if this is going to work or not. I pray it does. There is only one last option for us to stop these seizures if this doesn't work. I am putting a poem on here I found please read it if you have time. I love it!!

WELCOME TO HOLLAND by Emily Perl Kingsley. c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland