Busy Busy

Since our last post we have been very busy. After being denied for nursing care about six or seven times we were about to give up! Finally we were approved for 35 hours per week! We were hoping for 48 but will take anything. We started the busy process of meeting with our case manager and meeting nurses. We found the perfect nurse and she started last week! Because I am also an RN, I was able to apply for something called a Hardship Waiver. It allows parents who are nurses to care for their family member if they are unable to have a job outside of the house due to the medical needs. I technically work 17.5 hours as an RN with Oliver and get paid for it.
We also have some new equipment in the house. New bath chair, which Oliver so far hates, but will have to learn to love. Also, we now have oxygen tanks, a suction machine, and an Oximeter in the house. I didn't think we would really ever need them, but due to the fact that Oliver has trouble with excess saliva and getting it out of his mouth we need suction for emergency. Since he turned blue in his last seizures we need the oxygen and the Oximeter. While training in the nurse I showed her the equipment and said, "I really don't think you will ever need this equipment." Ten minutes later Oliver started having seizures, Oxygen sat level went from 98% to low 80's, and needed oxygen for about 20 minutes. He also needed his emergency seizure meds that day, so overall I told the nurse it was a great training day! I do have to admit that it was incredibly hard for me to hand Oliver over, even though I trust the RN. John and I do not feel comfortable leaving Oliver with anybody, really, so this was tough—but important! He is so sensitive to everything and has seizures so easily, but the nurse was fantastic! Adina and I were able to go outside and play for two hours in the snow, I was able to do house work, and laundry during the day!!! Usually we have to wait until night to do these things when we are both home. Adina already knows how to work the Oximeter and silence the alarms, she is a little nurse as well. Daddy has been gone almost all day because he’s doing his clinical work at the Good Samaritan (not the VA) and having the nurse come will be a real help.
Oliver had his sedated hearing test and has PERFECT hearing! When the audiologist said this I said, "Excuse me, perfect!? So he is just a normal man with selective hearing!!!" The nurses and sedation doctor were not able to get an IV placed because his veins are so bad. They had to use meds through his G-tube to put him out. Of course all of the excitement from this caused seizures, but he has perfect hearing!! Next time he is sedated for anything we have to tell the nurse ahead of time so they can make some special arrangements.
Adina has been ice skating a few times, but has now also decided that when she grows up, she wants to be a professional bull rider (she saw it on ESPN)! Don't worry, we will not be going out anytime soon to buy her a bull! She is also sure that she has a baby in her belly just like mommy. Now that we have a nurse we will be able to have more special Adina days. The first day that we left Oliver with the nurse, Adina was very worried that the nurse was going to leave Oliver. She is very protective!

Ice and Wheels

Adina tried out the ice and quickly realized the carpet was a lot easier than the skates on ice!! Most of her time was on her butt! Either way we had lots of fun! She held onto a chair and pushed it along slowly. She fell and said, Mommy, what do you say?" I had no clue!! She said, "Mooommm, when you fall you just get up and try again and keep movin forward!! That's what you said in the car!" Glad some things stick I guess. We will try again soon, we are supposed to have some 34 degree days! HEAT WAVE!! Might need to bust out the shorts and sandals.
We went in Tuesday for Oliver's 8 hour appointment with the Assistive Technology guys and they are absolutely amazing and filled with talent! They start with the base of the chair, look at Oliver, and start cutting out the cushions, back rest, head rest, foot rest, and straps. It is made perfectly for Oliver's little body. The chair is supposed to last about 5 years depending on his growth. Basically, every time he grows out of a clothing size, we go into Gillette again and they will change the size of the chair ("Grow the chair" in assistive tech terms). Luckily we are close to Gillette. We picked up the chair today so we could bring Adina. She was really excited too! Oliver did great on his first ride and seemed to love being able to hold his head up with all of the support offered by the chair. We were so proud on his first test drive that it brought tears to my eyes! Way to go Oliver!!


Ice skating or butt skating? Both were fun!


The chair before the first sit. There were many changes made from larger or smaller cushions, wedges, and on and on. Like I said, these guys are great!


The first test! Oliver didn't scream, I was holding my breath the whole time I think. He was such a little trooper all day.


First drive! We were so excited! Even the tray was cut out and assembled while we were there. The wood and cushion will all be covered.


Adina helps the staff with the straps, a proud big sister.


Figuring out the straps and we are outta here!


Wheelchair home and all finished. I never knew it was such a process but appreciate everything Gillette did/does for us!

Baby

We had the ultrasound yesterday with the high risk OB docs. So far everything looks great! She asked what we should look at first and I said, "Corpus Callosum!!" That is the part of the brain that Oliver happens to be missing. We looked and there it was, I was so excited I asked for a picture of it! The two staff in the room were laughing, apparently I am the first who has asked for this picture. We got a lot of images of the brain, we could not see the whole head, so we can't rule out that all of the Corpus Callosum is there. We will have another ultrasound in 8 weeks to measure head growth and check on the brain. We are cautiously optimistic! Chances are we will do an MRI of baby after birth to rule everything out. We could do an MRI while baby is still inside of me(crazy!), but there is no guarantee that baby would stay still, we have become pros at patiently waiting so we will just do that.
Oliver had his hearing tested today at Children's hospital. He responded to very loud sounds but not to the softer sound. It could be that he is not developmentally at a stage to turn to all sounds yet or he could have some partial deafness. The audiologist was rolling with laughter at Oliver. He would fuss and as soon as she would make a silly sound he would get the little Oli giggles. They were playing off each other and it was a blast. Small little things that I most likely would have taken for granted with Adina. Oliver is always teaching me something! There are other tests we could have done but with Oliver's sensory issues of people touching his head we could not do them. We will do a test called a Brainstem Auditory Evoked Response test. He will be sedated and they will monitor if the sound reaches his brainstem with the help of electrodes. It will be good to know this info. We know that he hears, just not sure to what level.
Last bit of news, again Oliver was denied for nursing/respite care. Again, like the last zillion, we will appeal until we get a good reason!
Hope everybody is staying warm!! Gotta love Minnesota winter, or I guess pretend to.

Now introducing baby Klawiter Number three! Better pictures to come! (In about 20 weeks=)

Merry Christmas!

We had a fantastic Christmas even with our big storm! Christmas Eve day we had lunch with Scott, Kara, and Kali Rose, went to church, and came home and spent the night and Christmas day just the four of us. It was the perfect Christmas of peace and quiet, minus the noise of two kids in the house! Here are some pics!!

I'm trying out my new hockey skates! First we got double blades, but talked to some hockey coaches who said if they learn on double blades, they will have to learn again how to balance on single blades. Adina got some Christmas money from her Great Aunt Marsha Klawiter and Uncle Tom Klawiter from California. That is what she used the money for and here she is practicing on the carpet pushing her shopping cart! Thanks Tom and Marsha!! That was really special!


Little Miss Kali Rose found her present early! With a face this serious we were not about to take it away!


The kids in their Christmas outfits.


Adina with the muff and hat she received from her Great Grandparents in northern MN. Adina first thought the muff was a duster!! Might be a great way to have her help me with the house work!!


Family picture time.


Yes, Adina and her baby are matching.


Adina explaining to her baby that Baby Jesus goes here, Mary and Joseph there, the shepherds who watch the sheep go there, and some other guys (wise men) live over there. She later saw a woman wearing a long fur winter coat and yelled, "Mommy, it's Mary!!" The woman kind of laughed, I'm not sure, is that a compliment to have "Mary" style clothes?


In our Christmas jammies from mom and dad.


Leaving cookies and milk for Santa. Yes, we believe in Santa in OUR house. Adina understands that Christmas is about baby Jesus. Sometimes we like to lighten up and have some fun! So, Santa lives in our house, until Adina figures it out in school someday.


The finished plate of cookies. Wow Santa(s) must have been hungry! Adina was a bit frustrated that Santa only took one bite of the last cookie and left it. She thought it was a bit wasteful! Guess she caught Santa there.


Adina reading Oliver his new black and white book. She really loves reading to Oliver.


Oliver smiling at the silly sounds mommy can make!

I'm all smiles! This Santa stuff is great!!


Adina helping Oliver open his gift. We don't do it for him, we put the paper in his hand and he will rip it. Oliver takes part in everything that we do, we never just do it for him!


Adina next to her kitchen that Santa brought for her.

Conversation

We made a last minute trip up north last week to visit my grandparents for Christmas. We have not traveled much since Oliver started having seizures, this was a bit of a test run. Oliver did great, minus the fact that he didn't sleep. He never sleeps, but it is a bit harder to manage away from home. Besides that, it all went well. We just know that the only people that can hold Oliver is myself or John. I know people want to hold him, but if we give in, then we go home and the seizures start. This may seem drastic, but as we have learned from other parents of children with seizures, this seems to really set some kids off. It's just life. My grandparents got Oliver a big stuffed Zebra. (Marty from Madagascar) Oliver can see him somewhat because he is black and white. They are now best friends, where ever Oliver goes, Marty goes too. I took him away the other night and Oliver let me have it. I got a video of Oliver talking to him. He will go on and on like this. He was a bit distracted here by me, but you can get the idea. Too cute for words!
Adina and I also baked some cookies for Santa. She loves to make cookies, well, eat cookies is more like it. Today we got Adina her first pair of ice scates, double blades. We will try them out tomorrow!
Yummy, the finished product!


Dumping the Sugar


Unwrapping the candy


Stir it up!


Marty my man! What's up!


Hey Mom! I'm just relaxing..


My three favorites.


More Christmas pictures to come. Looks like we might be snowed in for Christmas if the storm keeps coming this way. Perfect way to spend Christmas! The four of us warm and cozy at home.

G'day

Well, I made it home and loved getting to spend all of Friday with Taryn and the kids. Now, as you can tell by the time of the post, I'm severely jet-lagged. Oliver woke up at 11:30 tonight and is still awake, so my 2 hours of sleep felt like a power nap and I can't fall back asleep.

Highlights from Down Under?
--Hearing the Dalai Lama laughing when he came on stage and was playing with the peace offering of the Aborigine leader
--Watching the Dalai Lama try to convince a 4 year old girl who was on stage to try to sit in his lap-he was unsuccessful
--Learning how to play "footy", Australian Rules Football from the pros of the North Melbourne football team
--Daily dialogue and wonderful sessions on media, climate, Pagans, and Intelligent Design/Creationism... ask me about it, I'll talk your ear off
--Having a great group from Luther Seminary to talk about our experience and to explore with
--Getting a surprise phone call at 5:15 in the morning from Taryn and Adina--Oli didn't talk on that call
--On our last night, we got to see baby penguins come to shore and feed by poking their heads through rocks on the shoreline, it was pretty cool to be five feet away from them
--Feeling like the rest of the world's religions have a lot more in common with how I believe than you might think--a desire for peace, love, and mutual understanding while accepting each others differences
--Getting home to Oliver and Taryn being awake at 1:30 in the morning, and then Adina giving me a great big hug in her sleep (it made the cold of the 4 degree temps melt away)


I'll post pictures this weekend, but it's time to try to get over the jet lag and get some more sleep.

Brrr..

We finally got our first snowstorm! Only about six inches so nothing too bad. Some parts of the state got over a foot plus they are having blizzard conditions. My favorite kind of storm! I know all of you in California are jealous that you did not schedule a visit to MN now!
So a few updates since the last post. I know that I said last time that the urine tests all came back negative. Never mind that info. Genetic doc called today and she just received word from Mayo clinic that one level in the urine was elevated. I guess this comes with a slug of potential metabolic concerns. The doctor at mayo suggested that we retest to see if it is elevated again and then we will see what is next. I am a bit bummed about all of this testing we are doing again. I was hoping that this Christmas we would be passed this phase, perhaps next year. I could say no to all of it, but sometimes we feel that Oliver is really in pain, and if this testing can figure out why then we will do it. I would tell you the compound that is elevated but it is long and I forgot =) Like I said, I will worry more if it is elevated again. I am amazed at all of the different places they send these labs. California, Boston, Chicago, Mayo, Oliver has been studied many different places!
GI (tummy) doctor was last Friday. He said to continue as we are doing. He was a bit concerned about the fact that Oliver has been starting to vomit again, especially since he had lung issues last May. If he does get severe Pneumonia we will have to change his feeding tube to go lower into the intestines or perhaps a surgery. When Oliver vomits, he does not really know to cough it up and instead sucks it right back into his lungs. This could lead to severe problems. So far we have heard him gasping every time and run in his room and roll him over to help the little buddy. We sleep light, but don't worry, we do get our rest. As much as any parent of young ones I guess!
Last bit of fantastic news(sarcasm added here), Oliver was again denied by the state for nursing care. I am waiting on some calls to figure out exactly why. I know that when our fantastic (sarcasm again) Governor made budget cuts last year he cut a lot from where this money comes from. Yet, we have two new athletic stadiums, priorities. I am going to fight this until I get a good reason of the denial. I will camp out in front of Pawlenty's office door if I have to, not that he is ever in his office, or the state for that matter. It is very frustrating at times. We have run into people who feel that individuals with disabilities get too many services. Sure there are people who take advantage of the system, but every parent that I have talked to has to jump through the many hoops to get help for their child, often getting rejected. If you ever run into these people, set them all straight for us! Perhaps in a more tactful way that I often feel like doing!
John returns home tomorrow night (Thursday), very late. He did not bring a coat or his hoodie. I do believe they will all be in shock when they feel our below zero temps! John has not been able to write much, but I know that he had a great time and is ready to get home. Myself and the kids are really ready! Oliver gets angry with me every night that daddy does not get him up for the middle of the night feed. John sits and watches ESPN with him for a while, I feed him and put him back to bed. It is easy to see which parent he likes better in the middle of the night!
I hope you are all staying warm! We stayed in our pajama's all day today and watched the blowing snow out the window. Good day, would have been perfect if all four of us were together. Tomorrow!!