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 =)

Time to Roll!!

We had our appointment today with the rehab docs and Oliver was a little charmer. He had therapy first and did so well!! He has been stubborn so far at Gillette, but today he rocked it! We are mainly working on tolerating tummy time and being on the floor. It is really hard for Oliver to be on his tummy because he does not have the strength (yet) in his arms to push up or his head to lift. So even when he tolerates it for 5 minutes we are proud. To some this may seem like no progress at all but for a kiddo as special as Oliver small little movements like these that we take as being easy are really difficult. Oliver is doing a great job and John and I could not be more proud of our little man. The best part of this last month is that Oliver has just been happy. As parents I think that is all we want for our children, happiness.
Okay, back to the doctor update. Special kids with brain issues often times have problems with muscles either being floppy (not much tone) or tight (too much tone). Oliver has developed some tightness in his legs and has a hard time extending them. We have noticed this as well and we will work on it in therapy and at home.
Oliver, at 24 lbs. is beginning to grow out of being able to fit into baby things, as you might imagine. Strollers are difficult and other things like bath chairs. At the end of September we will meet for a wheelchair fitting and some other adaptive equipment. I know that sometimes we see or hear wheelchair and do the "ah man, that is really sad," thing. John and I are actually happy about this next step and are huge advocates. At the way beginning we would have gotten sad at the thought, but that is passed, it is time and we just plain old need it. He has a hard time holding himself up in a stroller and will be more comfortable and happy. That is what it is all about, happiness =) That is why I added the Oliver smile picture. This doctor was pretty cool, she even had blue hair. Not the old lady blue, an actual blue streak! It's fun to get a doctor with some personality sometimes.
It will most likely take 3-4 months before Oliver gets his new wheels. It is a tedious process. You need an Occupational Therapist, Physical Therapist, Special Seating person, and the Vendor. Whew! Getting them all together is the first step! Then somebody (not me) writes it very specifically in a way where all points are covered, just so insurance will cover it. So lame, it would be a lot nicer if we could just walk to the store and buy one! I am sure there will be parts insurance won't cover, but thanks to that benefit, Oliver is covered. (Thanks again!) People don't believe us when we say insurance does not cover everything. Here is an example, Oliver has a feeding pump that allows us to set the amount that goes into his stomach. They cover the pump, but did not cover the feeding bags that the food went into. Oliver has to drink formula that is thicker, so he does not get fluid into his lungs and end up with a respiratory infection. They will cover the food part, but not the stuff to make it thicker so he does not get pneumonia. Strange!! (Luckily, he tolerates the cheaper way to make it thicker)
Oops, off the soapbox again and back to wheel chairs! John and I can decide between an adaptive stroller or wheelchair. Oliver will also start getting X-rays every few months of his hips and spine to make sure they stay straight and in place, another process that I guess is part of the game. Don't get us wrong, we are going to continue working on standing, taking steps, crawling, all of the normal baby stuff. That is in the long and distant future, if at all, but all of this stuff is just stuff right now. Oliver is happy!

4th, Family, and Fun!

Waiting for the fireworks, Adina was excited until they started!

Grandpa Hanson got a pony for the grandkids. Adina wanted me to have a ride. Poor horse, I think I may have exeeded the weight limit for this ride!

Oliver gets a turn on the horse, he is more like his dad. Not a fan of horses! I should post the last picture of John on the horse too. We rode through the rain forest in Australia when we were dating. John's horse could run...fast! John spent most of his time leaning over hugging the horse for dear life!! It was as fuuny as it sounds!

Adina on the horse. She now wants to ride alone, she will have to wait a few more years for that.

Cousin picture on the 4th! Not easy getting 4 kids under the age of 3 to look at the camera! Kali, Adina, Oliver, and Charlie.

Fireworks start, Adina gets scared and falls asleep. Maybe next year.

Great Grandma Rosie and Oliver. My favorite picture, Oliver looking up and smiling makes my heart melt!

Scott giving Kali Rose a ride in the cart. Kali Rose is already 8 months old!

Adina talking to baby Naomi and Great Grandma Betty.

Adina holding baby Naomi with the help of Naomi's mommy. We were at Naomi's baby shower and Grandma Betty's Birthday party. Adina calls baby Naomi "Baby Homie!"

Great Aunt Faith snuggling with Oliver. Oliver sure loved all this snuggle time.

Kara, Naomi, and Paul. The last two babies born in our families both have bright red hair!! My sister and brother-in-law (Kara and Scott) had Kali Rose in November. Paul and Kara(John's aunt and uncle) had Naomi in April.

Adina helping Grandma Betty with the candles.

Gracia gets a turn hugging little Oliver. What a lucky little man!

This picture of Oliver was taken durning therapy. We always keep the camera close! This day he tasted Ketchup and Pickle Juice! Seems crazy! We learned that children with special needs respond more to very bold tastes just like when they get a massage they need very firm pressure. Seems like a lot but Oliver calms down with firmness. He also sleeps at night with a weighted blanket. Oh the things we have learned this last year!


Hope you enjoyed the pictures! Thursday Oliver has his big appointment with the rehab doctor. I am excited! I heard she is great. We have been having a fun summer so far. Oliver is doing really well with all of the travel and different locations. I will update more after the appointment on Thursday!

RN

I am officially an RN! I took the NCLEX test on Tuesday, left thinking I failed, was so upset I went the complete opposite direction from my house. I have taken this road before, but I was so consumed with thinking about all of the questions I got wrong I went the wrong way!! I had John convinced that I failed, but I passed!! Yay!! Now I am going to relax and look for jobs. Unfortunately there is not the nursing shortage in Minneapolis that there is most other places. I will find something. Happy 4th!!