Eat, Sleep and Number 2!!

It has once again been forever since I have written on here!! I have been scolded by a few about it too!! Sorry:) Our house hold has thankfully been so healthy this winter season so far. No colds or stomach bugs or anything!! (knock on wood) This has been a blessing since a few doctors have us terrified of Kaden getting sick. Kaden will be two soon!! I just can't believe it!! He is still such a little guy. And since he is soo behind developmentally it still seems like we have a tiny baby in the house. Its heartbreaking to see time go by and yet Kaden stays the same. I have learned alot about cerebral palsy in the last year. I think at first we really focused on learning alot about his epilepsy and heart problems. Once those were under control we started learning everything we could about the CP (cerebral palsy). It didn't take us long to see that the CP was the biggest of all his problems. I didn't know at the time how it would affect just about everything!! Which leads me to my title---Eat, Sleep and Number 2. This is all I feel like we have been focusing on for the last few months!! The CP makes simple things we normally take for granted so difficult for my little guy.

The oral motor problems make eating difficult for him. We have had therapy to help with eating for over a year now. We have seen some progress, but its slow. He now will usually eat a small bowl of baby food once or twice a day. I cant say he enjoys it but he usually will swallow it. When we feed him his bottles we have to clutch up under his chin so he can keep his suction on the nipple. We have gotten used to doing it this way but if anybody else tries to feed him its very awkward for them. He is still very small for his age. Just 19lbs 6 oz and 28 inches long.

Sleep is still a tough one around here!! The brain damage can cause kids to not be able to stay in a deep sleep. Kaden gets 4 medications at bedtime to get him to sleep. This will usually get him to sleep till 3am. Then hes up and he is medicated again! Sometimes he goes back to sleep and sometimes he just doesn't!! Its crazy!! And during the day, when its nap time, we have to medicate him to sleep too!!

And now for the whole number 2 issue! This is yet again another CP issue. With the low muscle tone CP kids have difficulty contracting their abdominal muscles to produce the pressure needed for bowel movements. So to make a long story short, he is pretty much completely dependent on suppositories to go. We also give him Metamucil and lactulose, but these just don't seem to do anything.

I am glad that at the present time sleeping, eating and pooping are our biggest problems but at the same time it really hits home the reality of these life long struggles my son faces. These are simple things that are usually taken for granted. Kaden is happy and loved by so many!! That is what gets me threw the hard days. Knowing that and seeing that beautiful smile!!

Ready for Fall!!!

I once again have totally neglected Kadens blog!! We are just so busy all the time. It has been a wonderful summer filled with all kinds of trips and fun stuff!! We took Kaden to my parents cabin on Lake Gogebic in the U.P. I was soo worried about this, but figured life goes on and if all his issues were stable then we would give it a try!! A 12 hour car ride is daunting in itself but add a baby with "issues" and you just don't know what you'll get. We drove all night long in the hopes Kaden would sleep most of the trip and for the most part it worked!! He was great and we all had a wonderful time!! We came home with lots of good memories and a few mosquito bites too!
Kaden has gotten his new leg braces(AFOs). For the most part he hasn't fought them too much. I am sure he would like to be free of them but he is pretty good about not fussing to much when they are on. All his other appointments pretty much went as expected this summer.
We got new mold for his hearing aids so they fit better. We have seen nephro and cardio and they have taken him off all his cardiac meds!!! Yeah!! The blood pressure problems all had to do with the ACTH he was on. The SVT is something that hopefully he grew out of. The cardiologist said that it is a 80% chance that it will never come back!! So far soo good!
He has had PT,OT and speech therapy(for eating) all summer and starts his new special education class Sept 7. It is just once a week and we stay with him the whole time.
One good thing that happened is that our insurance company found the necessity in paying for Kadens Pediasure till he turns 2. Then they will reevaluate it. That stuff is soooo expensive. If you think formula is expensive, its nothing compared to pediasure when you need 90 cans a month of it!! They have deemed him failure to thrive and with his oral motor problems he doesn't eat baby food well still. I hope this improves though.
Kadens Opthomologist appointment went as I expected it too. They don't think he sees much of anything. We have know this in our hearts for along time so it was not a surprise, but it still doesn't make it hurt any less.
I am ready for fall and to get the kids back in school and get back on a schedule!! They have done more swimming this summer than any other I think!! Our lake front property which we intend to build on in the future is within walking distance to our house. So the kids have been swimming like crazy!! They got a floating dock from my parents for there birthdays and it has been used like crazy!!! Even Kaden likes dipping his toes in!!

Appointments Appointments!!!!!

Well, I feel kinda bad I haven't posted anything in such a long time. Things have been pretty calm around here for the last few months which has been such a welcome thing in our lives. We honestly went like 6 weeks with no doctor appointments and man it felt good!! But all good things must come to an end and now it seems like we are being ambushed with appointments again!!
Hmmmm where to start????? Here's something kinda funny.....Kaden got his teeth cleaned at the dentist the other day.....all four of them!! We were there for all the other kids and I had the dentist look at them cause they are so stained. I don't know why and I even brush them. I was kinda thinking maybe it was from all the medicine he has been on in his life. So to make a long story short they were cleaned and look much better!!
Now for the crappy stuff. Kaden has to get AFOs. These are braces for his legs. He will get casts on his legs next week to get fitted for them. His rehab doctor thinks it is time for them. We have noticed that Kaden points his toes and feet down all the time. Not all the time but alot of the time. Apparently this is the beginning of a contracture. If he does this alot his calf muscle will shorten causing his toes to stay like this. Soooo, the braces are a must. I kinda dread having another thing to have to explain to people but I know most mean well.
Kaden has gained alittle weight, so that's good. He weighs 17lbs 1 oz. Still pretty little for his age. Our rehab doctor really wants the OT therapists to be more aggressive with his therapy for eating. He still does not eat baby food well at all. He has a lot of oral motor problems but does seem to be getting alittle better. I am hoping he can master this with time and we can avoid the feeding tube which has been mentioned to us several times now. We have a prescription for pediasure which he now gets mixed with the baby formula. This gives him extra calories and I think has really helped with his weight gain.
Wednesday we go for a ultrasound of his scrotum. Yeah....apparently one of his testicles hasn't descend?? Go figure!!! I hate to say it but this is the least of my worries!!!
We also have to get labs drawn this week too. They keep a close eye on his liver function cause of all the meds he's on. Poor guy. He does usually do well getting blood drawn though.
Oh and I almost forgot that Monday we go down to Childrens hospital to see the opthamologists.
I don't think there is much they can do for him but the pediatrician wants him checked out again. We know he has cortical vision impairment. No one really knows how much he can see but Brandon and I do not think it is very much. This is so heart breaking for us. He also has what I have self diagnosed as a nystagmus. His eyes periodically look downward and shake. I'm not sure what if anything they will do for this. I will just have to wait and see.
On a happy note, we have bought property for us to build on in the future. It will be a while but it makes my heart happy to know that someday we will make a house that will be so perfect for Kaden and the rest of our family!!! Continue to keep our family in your prayers they are so appreciated!

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!!!!