Long Day

Today was a big day for Oliver. We have been trying to get into the U of M eye/genetic docs. They were booked almost a year out the last I called. We got a call last week because they had a cancellation and could fit Oliver in! They only meet once a month so you work around them. Oliver was a rock star. He was totally showing off his skills. The last time we went, they did not think he could really see anything. Today Oliver was looking at the vision cards, with fingers in his mouth, reclined against me, totally looking at them all. She was moving them all around and he was like, "Really, when are you going to make this a challenge!" I was so proud of that little guy. Of course as soon as they touched his face he let them have it, BIG time. Three of us had to hold him down, he is tough! He is near-sighted and his astigmatism has gotten worse. But she felt that his residual vision has, for Oliver, greatly improved! YES!!! So proud of him!! No glasses yet but perhaps in the future. Won't he look so intelligent! She said she wants to remain optimistic that it will continue to improve, but.. I finished the sentence. We need to be realists here. Doctors. So predictable. It is true though, with Oliver we don't know when the vision will just stop developing. We are still gonna celebrate this!! We will be testing his hearing at Children's. We know he can hear and is very sensitive to sound, but he does not always track sound from certain directions.

Next we met with the geneticist. Was not expecting anything, unfortunately we got something anyway. Some of the genetic testing returned from the University of Chicago, some are still pending. One test so far came back with differences where there should be none. It is a gene that detects Lissencephaly(abnormality in wrinkles of the brain). Google explains better. There are many types and varying levels of severity, but we really don't want anything to do with this, life expectancy can be very low. We are not worrying too much, yet. More testing to come I am sure. John and I will get another genetic test to see if we share any of these, and Oliver will have more blood work. These results were a little shocking. We were under the impression that they would most likely be negative. Such is life.
So, good news and potentially bad. We are at least thankful for the good and are not going to worry until we know more.
We are on a new seizure med and so far so good. We started at half a tablet once a day and will be increasing that slowly to two tablets a day over 8 weeks. Hopefully this is the med. Oli has been happy again, life is good.
Happy Thanksgiving! There is so much to be Thankful for, for example, all of you!!

October

We had a visit from Grandpa and Grandma Klawiter in October! They made their way all the way from warm California to cold Minnesota with a few stops in between. We always look forward to seeing Grandpa and Grandma and wish the drive was a bit shorter! Here is a picture of the four generations. Of course Adina is smiling nice for the picture.


The next three pictures are of Oliver working hard in therapy. The picture of him sitting alone was the first and only time he has done that. It was a quick one, two, three, quick take the pic! Small, tiny step, huge achievement. Yay Oli! He is one hard worker!




Adina blowing the candles out on her first cake. We had a little family party and a bigger party later. Happy Birthday Adina!



Godmommy Martha and Mr. Oliver enjoying the lovin!


Opening presents with a little help from the boys.


Adina and Oliver on Halloween. Adina is Tinkerbell and Oliver is a boy in a tu-tu. Adina thought he needed something on! The joy of having an older sister pick out your clothes!


Adina put her costume on and said, "Now I can fly!" Oh boy, not again. We had to have a talk that her wings were only pretend!


Adina and a new friend.


Tinkerbell had to be winterized for a night out in Minnesota.


Mr. Monkey (and his dad), Pumkin Man, Batman, and Tinkerbell.


Cuties on the couch. Never easy to get this many kids to look and smile. They had one thing on the brain. CANDY!


Adina and cousin Kali Rose who was a butterfly.


It was a fun and busy October that flew by. I wish I could say it went without any low spots but this was just our month and now it is time to make November great! After Oliver was in the hospital we temporarily thought his seizures were under control. He soon started to have them again. He seems to be changing a bit in the way he displays them, or adding on different types. We raised the meds again, did okay, and then one night Oliver woke up with the highest scream I have ever heard. I ran in just in time to catch a seizure and one more after (both less than 3 minutes). He became increasingly irritable, we could not do anything to calm him. So we just rocked him while he screamed. Now came the hard part. Oliver of course can't tell us what hurts so the neurologist was not sure if he was having more seizures or irritable from the Keppra. Some kids just don't react well to this med, the only way to know was to increase the dose again. If he became more angry, the problem was the med. Seems easy. We had three days of pure Hell to be honest. It was the medication, Oliver screamed for almost 24 hours straight, only sleeping for about 2 hours one night. I was so frustrated, not at Oliver, but with myself because I could not figure it out or help him. Friday we lowered his dose to stop the reaction and tomorrow (Monday), we will be in touch with the Neurologist to determine the new medication. Whew! This whole seizure business has been a huge learning experience and just when we think we have it figured out it changes.
We are appealing the rejected nursing care again. Now that his Epilepsy is somewhat out of control it should help our case. We have learned that getting help for the disabled comes with many hoops to jump through and a whole lot of needed patience. It is this way for every parent trying to get services for their child, not just us. So, we just take a breath, a big one! We will keep you posted. I know this was the mother of posts! A lot happened this month. Oliver is strong, much stronger than we know. I asked Adina one day if she ever gets angry with how much Oliver screams, because it was overwhelming. She was like, "No mommy, it's fine, because I love Oliber." (Adina calls Oliver, Oliber.) He is now back to his happy self, hopefully the new medication works well.
We still have not received the H1N1 vaccine, it is frustrating but what do you do. So we are still keeping the kids away from everything. Halloween was Adina's, "Get out of Jail Free" pass.

More Up's and Down's

Adina is now 3 years old and proud of it. She also thinks that this means she is a grown up! We had two Birthday celebrations for her. On her actual day we had a little family celebration. A week later we had the big family and friends party. Adina had so much fun with everybody and received some very nice gifts. She asks everyday, do I have another party today? I will post pictures sometime in the future.
The day after the big party Oliver became very lethargic. He sometimes gets this way after having a seizure or just having a busy day, like the party. It continued and we were struggling to wake him up by the end of the week. I called the hospital to see what they thought, they said get him in right away. As soon as we got there they admitted him, we waited in the ER for his room to open for about 6 hours =). Oliver is known by some of the hospital docs there, nice to have some continuity of care if we have to be there. They knew something was way off. Once they called the Neurologist we figured out the problem. Oliver was most likely very overstimulated from all of the snuggling he got at the party. I guess if you try and imagine it, it would be. Not being able to see and having all of the different touch and smells. Anyway, this probably threw him into seizure mode. Basically he was having seizures on and off for 5 days, hence the waking up for a few minutes and sleeping again. He received some medication that interrupted the seizure and woke him up. Now we play the medication adjustment game some more. We got a prescription for the emergency seizure med. One dose given for any seizure over three minutes long. After insurance the cost is 300 dollars for one dose. Insurance knows we need it and will pay I suppose. Anyway, it helped and they did not need to start an IV. Oliver is an incredibly hard IV start. Last time he needed one, after nine tries, they brought him to the anesthesiologist who work in surgery to do this.
We don't want anyone to think that we are angry for snuggling Oliver. Trust me, we enjoy the break when others hold him. But now that we know this may be a trigger we cannot risk it. Don't be offended when we say, Please don't pick him up! Holding his hand is okay, talking to him is okay, but we can't risk more seizures. Not only is it hard on Oli, but our family.
We are now checking in with the neuro doc every other day. In the hospital with some of the health care team and other doctors advice, John and I have decided that we are not taking the kids out anywhere until they get the H1N1 shot. We are not sure how Oliver would tolerate this with his seizure and brain issues. We are not taking the chance. Until we get the shots, no church, no shopping (except the necessary), no visitors, we are now hermits! Yes, we may sound crazy, No, we don't care. We love you all and love the support we receive from everybody. That is why we know you all understand. Thanks =)
We are adjusting to this change in seizure pattern, trying anyway. I am not sleeping at night, I sit by Oliver's bed and watch him sleep. I have this intense fear I am going to fall asleep and he will have a seizure that will be missed. I lay in bed and get so nervous I just sit with my little man instead. Sometimes the fear just hits me and I have a good cry, it helps. This will normalize again. We were denied a nurse again, I will appeal until we get some help! A kid with this many issues including the worsening Epilepsy deserves some nursing care, and we desperately need some qualified respite.
Thanks again for all of the love and prayers. It really is what gets us through these not so great times. We will update with any news. Oliver has had two good days post-hospital!

More Stuff

This week has been a busy week of appointments. Monday Oliver went to see his PM and R doc, (Physical Med and Rehab doc). She was happy with how Oliver is now bringing his hands together. This is very hard for somebody who cannot see and is missing the part of the brain that brings everything to the center. Yay Oli! We are proud too=) He was having a good day and was holding head up well, she was pleased. His legs are stiff, which we have known. His x-rays looked great and we now have his baseline to compare to in the following years. The x-ray tech said, "Can't he walk?" No and most likely he will not. "Oh that is so sad!!" She said. No actually it is not sad, Oliver is happy, it is okay!! You would think she would be used to kids not walking working at Gillette! Dr. Q is recomending that Oliver is also followed by an Ortho doc. Right now Oliver is great, but as he starts to use his legs more he could develop more problems. Better to know an Ortho doctor before you really need one. Also, we will be getting fitted for a special needs car seat tomorrow and will be evaluated by a speech therapist tomorrow. Within the next 6 months Oliver will be fitted for AFO's. They are braces that will go over the lower part of his legs. He needs a therapy chair, and most likely will soon need a stander. A contraption that helps him learn to bear weight. She also noticed when Oliver stands he points his toes and curls them under. Not a big problem, just more to unlearn. Keep in mind these bits of equipment do not produce miracles, just gives Oliver the best chance. Today I was stretching Oliver on the floor and for some reason started saying "WoooooooW" in a really annoying and silly way. Oliver loved it and actually started yelling back at me. The four of us were laughing so hard! As soon as we turned the camera on he stopped.
We made the final wheel chair order and when our lovely insurance covers it we will go to Gillette to have them make it special to fit Oli perfectly. Speaking of insurance, MA contacted us and said once again they were dropping us because I have a job. I am still far under the hours/pay for them to drop us. We are appealing it of course. I actually went to their office to speak/give them a piece of my mind. We could not even see our worker, I paged her and spoke to her on a phone. That is what everybody there has to do, wait in line to talk to somebody on the phone. Nice system. She then asked, "Is your son even disabled?" You can only imagine my response. I will let you use your imagination. Remember they get copies of all of the medical reports. Cross your fingers and say a prayer. Just when we need five pieces of equipment we hold our breath that the system won't let us down. So that is our quick update. We will soon add pictures. Adina turns 3 on the 4th and is having her family Birthday Party on the 11th. Let me know if you will be around, there will be pizza and ice cream cake of course!

John's Art

I was looking at some work that John had to do for one of his classes, Gospel and the Global Media. He had to do a drawing or something that represented him and put it on his class blog. Well, I love it and thought you should all see it as well. I will also put what he wrote about it. Enjoy!


I used my illustration to set my own table. There are four people in my family and each of us is represented in this photo which is laid out on our kitchen table--the place we share meals as a family and representative of sharing our lives and faith with friends, family, and neighbors.
Items of note:
At the bottom of the photo, my wife Taryn's stethoscope shows her nursing care and love for people, and also the IPod with headphones shows how she enjoys running and being outside.
My daugter Adina is almost 3 and loves Dora the Explorer--if you don't have kids, Dora is the American Idol of toddlers. She also has a stethoscope from her "doctor" kit because she loves to take care of people and is like her mom.
Then, you see a feeding tube and stuffed animal. This represents my son Oliver, who is 1 1/2 and has a feeding tube in his stomach to get most of his nutrition/medicine. He has severe developmental and physical disabilities from birth, but he has taught me and my family so much about love and overcoming obstacles. He may never walk or talk, but he communicates by smiling and laughing--and he loves to bring that stuffed animal to his mouth which always brings a smile to my face.
I am represented by my well-worn Twin's cap which shows my love of sports, as well as the Bible demonstrating my journey at seminary, but also our family's united faith. Each of our items is clustered together--family and togetherness are essential to our lives. Each day, Taryn and I watch Dora with Adina and feed or do therapy with Oliver and we love being outside.
On top of the Bible, I borrowed some of Adina's blocks to build a partial wall. There are walls in each of our lives, but as long as we leave room to come in and out, we are constantly interacting and sharing with our neighbors and don't let the walls hold us back. We are living in a world which has walls built by the media and different perceptions that influence who we are--through cartoons, sports teams, the music we listen to, the version of the Bible we read, and the reaction people have to seeing my son, but through it all, love unites each characteristic.

Day of F's!!

First things first... I finally got a job!! It was not something that I perhaps first thought I would be doing, but it sure is funny how things just happen to fall into place. I have been worried all summer about finding a job and about when I do, who will watch Oliver. It has been a source of MAJOR anxiety for me. Finally I just threw my hands up and said it will all fall into place. A few days later I got a call about a job with a pediatric home health company. When I went in to have my TB test they asked how much experience I had with special needs children. Well of course little Oli came up and the nurse asked me how many nursing hours he received. Nursing hours, what do you mean? We had never been told that he would qualify for this, only that Oliver was not yet old enough for a personal care assistant. The nurse set up an assessment of Oliver, came to the house, and recomended to the state that he gets 48 hours of private nursing hours! (Cross your fingers that the state agrees, we all know my past frustrations with issues like this). Not only that, but I could get paid 20 of those hours!! So I got a job and somebody that could spend one on one time with Oliver and know what to do if and when he has his next seizure, starts to choke or aspirate, do the feeding tube and meds, and on and on!!! Like I said, it fell into place!! I will keep you updated on the progress of that. He has his wheelchair eval in a few weeks.
We took the kids to the State Fair and Adina loved it, Oliver, not so much. I joked with John that it was our day of F's. (Sounds bad huh?) Adina has been saving coins to bring to Feed My Starving Children (Great Organization.) She went in and handed the woman the coins and said, "So where are them kids I'm gonna feed?" She was pretty proud about it. Next we went to the Fair and had some fun! Adina went down the slide with me, on the way down she was so scared she had a big fluff! We ate a lot of food and all of this caused a lot of fatigue, and a few more fluffs! It was a great family day! So there is our day of F's!!
We have been noticing lately that Oliver is getting stared at a lot more. Some people are so rude about it. We understand that it is human nature to be curious and look, we all do it. I usually don't mind. Then there are times that people look disgusted. One woman at the fair came and stood right in front of the stroller and looked down at Oliver with a gaze I could not even explain. Adina even noticed it and looked up at me like, what's with her? I went and stood in between her and my children. John was really upset by this and I was as well. What do you do? There are ignorant people out there. We have been told by other parents that this and the comments would come sooner or later.
Anyway, enjoy the pictures!! Adina has a birthday coming up soon. She has almost invited everybody we have recently seen, including many friends, random kids on the playground, grocery story, and the maintanence man! We don't even have the party planned yet! She continuously amazes us with Oliver. She always thinks about him. At the fair he got scared with the loud sounds. They sit next to each other in the stroller. She said. "Mama, we gotta get outta here fast, little Oliver does not like this!!" She put her arm around him and rubbed is head until he stopped crying.

Adina and her second cousin Abby.


Adina likes to get in bed with Oliver to give him kisses.


Adina tickling Oliver.


Adina and Papa H. playing Puff the Magic Dragon. Adina's favorite song. When Oliver is upset she will sing You are My Sunshine to him. Not sure it helps =)


Adina carries the coins into Feed My Starving Children. They were heavy!


Adina giving the coins and telling the lady, "This is to feed them kids."


Mommy and Adina going down the big slide at the State Fair. We got a little air on the bumps!


Mommy and Adina on the Bumble Bee ride.


The first solo ride!! She loved it!



This would be the fatigue part of going to the fair.


Cozy in bed again.


Last day at the beach for the year.


Close up #1.


Close up #2.


Cousin Charlie on his 3rd Birthday! We had a great celebration!

A Pinch to Grow an Inch (or Half Inch)

Oliver had an appointment today at Gillette to be fitted for a few things. First was the corner chair. It is just like it sounds. The back of the chair is a corner so when Oliver sits in it he has support. In the front there is a tray so he can practice using his arms and pushing off things. It is a lot like a high chair, but it is on the floor so Oliver can be at the level we are when we are playing on the floor. Insurance does not cover it but we will use the benefit money for this. Gillette found it at a store for $200 dollars off the retail price. I was going to ask them to fit him for a bath chair as well but Abby (Oliver's Physical Therapist) beat me to the punch. She already had that all arranged! So he was fitted for a chair that will make it easier for him to sit in and better for our backs. Right now he uses a bath chair that is for children of normal development. One more month until he gets fitted for the wheel chair! It also will take a while to get the bath chair. First the therapist will fill out the form, then it will be sent to insurance, then they get to decide if Oliver is delayed enough to need a bath chair. They get to decide a lot of things. I know, me venting about insurance is a common thing. Most likely they will cover the bath chair because bathing is necessary. The corner chair however will not be covered. Sitting and learning to use your arms is not as important as a bath? I know I know, not everything can be covered. I should be happy that we have insurance, and I am. Without all of the help we have received I am not sure where we, or Oliver would be.

Appointment two today was Oliver's 15 month check-up. Great news of the day.... Oliver's head grew a half of an inch!! This is big big BIG!!! It has not grown since he was four months old and we have no idea if and when it will grow. I took Adina's head growth for granted. Oliver's head growth we celebrated!! His height and weight is still going well. He also had an x-ray of his lungs, all clear!! No aspiration of food, whew. So, I would say it was a fantastic day of appointments. More therapy tomorrow and an assessment on Thursday to see if Oliver will qualify for any private nursing hours. Not going to hold my breath. I just keep reminding myself to be patient. As Oliver gets older he will receive more help. Right now they (the state) say that everything we do for Oliver is the same that other parents have to do for their kids. So we wait. Wait until Oliver reaches an age where all other kids are potty trained and we have to start ordering bigger diapers. Wait for other kids to feed themselves when Oliver still uses the tube. Wait for other kids to walk/run... you get the point. We are not sad about this, we just know we have to wait. We are having as much fun watching Oliver grow as we did with Adina. Oliver continues to teach us a lot. He really is the best, just like Adina. We got it pretty darn good! We just have to be patient =)