Home is Good

Christmas and New Years is over and I have to say that I am glad! Due to the med shortage we had to keep Oli in the hospital until he was safely transitioned off of the "good stuff", on to the "it will have to work" stuff. The first few days were the worst for Oliver. We made it to Christmas Eve services at a lovely church right by Gillette. The nurse that was taking care of Oliver that day, who is a FANTASTIC nurse, kept me updated via text. People came and prepared meals at the Ronald McDonald house and we made it a perfect Christmas. Adina created a sign for Oliver's door that said, "Santa stop here!" She was very worried but Santa did stop. Gillette gave each of the kids amazing gifts and we brought some from home. Adina wanted to wait for all of the gifts until Oliver was home so we only did a few. We took Oliver home on a 24 hour pass (just enough time for Santa to come to our apartment with the rest of the gifts) to see how he would do and he needed a few more days at the hospital so New Years party also took place in the PICU. We did have a party! We made the best of it and made some silly memories too.

Adina is back at school (YAY!). She had to post a wish for the New Year at school. A lot of kids wished for toys or pets, the normal kid stuff. Adina wished for her brother to not have any more surgeries at hospitals. The other day she told me she always wishes for that on the wishing star but it just won't come true. It breaks my heart and sometimes I feel like she is missing out on just being a care free little girl. A few days ago Oliver was having a significant amount of pain. Adina sat and rubbed his legs and said, "don't cry buddy, sissy is here now, I will stay with you until it's better." Cora, feeling like she too should help, grabbed the thermometer and tried to take Oliver's temp. Last time I checked the eye ball is not the best place to take it. The girls love their Oliver. I guess this is just normal for us. Adina has no fear of the vent tubing or alarms. She just fixes it.

Hope you all had a very Merry Christmas! We are looking for nurses to fill some open shifts at our house so if you or someone you know is interested let us know! Needs to be RN, preferably some IV and vent/trach experience but we can train.


Brother time.


Santa came to Gillette. Cora clearly was not a fan.


Volunteers came and made Gingerbread houses with the kids.


Oliver in his chair having some play time.


Adina loved her Bitty Baby American Doll from Santa (Gillette). Thanks!! We were all amazed!


Merry Christmas!


Oliver liked this noise maker.


The kids just hanging out all together.


Adina helping Phin with his stocking. I guess baby wipes are exciting!


Phinneus..AKA...The Chunk!


Adina put cookies out a few days late but Santa still came. Santa is kind of a sucker for cookies!

Party Time


Cheese!


Lights out, glow sticks on! Oliver loved the lights, who says you can't have a party at the hospital.


Happy New Years!

A whole lotta action

A lot has happened in the last few months and I have not had a lot of time to post. About six weeks ago Oliver was in significant pain, we happened to be at Gillette for another appointment at the time when Oli had a wet diaper and we realized he was passing stones. A whole lotta stones, which would explain the high level of pain. They did an ultrasound and his bladder was full of sediment. So now we cath Oliver if he holds his potty too long. We were hoping the pain was resolved at this point but Oliver had some more going on. He had been passing some blood from his tummy which we have been managing from home but the amount kept increasing so Oliver went to the hospital for a quick five day tune up. They scoped him and found small erosions in his tummy. They figured it was a mechanical injury from his extreme movements. His G-tube was scratching his tummy causing it to bleed so they did a quick procedure and put in a different tube. This will cause less damage when he does have his crazy man action going on. So, now we are home preparing for Santa to come. Every time Adina is being a stinker I just have to say, "oh, I'm calling Santa!" Works every time! We will milk that one until she figures the whole Santa thing out! Do not worry, all of you who do not believe in teaching kids the magic of Santa. She knows the whole Jesus part of Christmas too but kids are only kids once.

Unfortunately, it looks as if we will have another hospital stay this week. Oliver has two meds that run through his IV continuously for pain and irritation. One of those meds is Versed. We were running low on our supply over the weekend, which rarely happens, because the pharmacy is so on top of things. I called and we learned that there is a nationwide shortage of that drug and all of the drugs in that family. It is a drug that cannot safely be stopped abruptly because of withdrawal and there are no other IV drugs to switch to because they are all out as well. Our safest option is to bring Oliver to Gillette to safely find an alternative where we have doctors that know Oliver well and can help quick without making many phone calls. It is just life and now we are thinking of ways to make Christmas just as special if Oliver is still in the hospital. We will be figuring this all out on Thursday as we have enough meds to get us through that day. We are so lucky to have such great resources for Oliver. His Gillette team is amazing and the hospice team have all become special to our family as well. The kids got to see Santa at Gillette and decorate Gingerbread houses. If you are ever questioning if there are genuinely nice people left in this world go and sit in the waiting room at Gillette. Everybody that works there is really a special kind of person. It is the one place that we can go where people see Oliver in his chair and say, "What a cute little boy!" Usually people see him and do the pity thing, which gets old. All kiddos are treated this way at Gillette, it is a safe place.
Kids are all doing well. Adina is on a LONG two week break from school. Cora has learned that hitting big sister is fun. She is also learning a lot about the time out corner. Phinneus is two months old and is one easy baby! Oliver is happy and has been playing on the floor with his siblings a lot!
Sorry for the mother load of posts. A lot has happened the last month. We hope you all have a peaceful Christmas, Hanukkah, Christmauka, Kwanzaa where ever you are.

Our many attempts to get all four kids to smile nice for Christmas pictures!






Adina loves to take pictures, usually of her foot. This is one of my favorite pics of Phinn!

Bummer

We had a good few months and managed to stay out of the hospital but we hit a bump or two. A month ago we realized Oliver was having pain when he went potty and then he actually passed some sediment. They tested it and realized Oliver had kidney stones, OUCH! That explains the pain. We had a few appointments and are managing that, at least we were managing all from home. Then Oliver had blood from his tummy that kept increasing. He is at Gillette PICU trying to figure this out. Of course we get there and it stops!! It is more frustrating than I can say! I will post more soon but wanted to let everybody know. Now the balancing act of staying with Oli and getting the other three back and forth!! Sorry for typos, didn't proof this one.

BOO!

The kids painted pumpkins, Oli did a pretty awesome job on his. I helped him hold his brush and then we tied it on and away he went! We had our own little family party the day before. We cranked the Halloween tunes and had a blast. Oliver is quite the little party animal.




A skunk, pumpkin, pirate, and the Queen of Hearts all in one house. Oliver had a lovely hook assembled by one of his nurses out of tin foil. He laughed when we put the make-up on and smeared it right after. Stinker!







Phinneus all snuggled up in his blanket from Great Aunt Gail and Uncle John. He loves it!


Oliver is doing so well we were able to use his stander again! He was working so hard he had to wipe his brow! We have not been able to use this since last spring but Oliver is in rock star mode and showing everybody what he is made of.


Hope you enjoyed the pics. We had a fun family party and went out Halloween night with the Choudoir family as we have done for the past few years. It was a blast! Oli is doing really well right now. I am almost afraid to talk about it but I will. He has gained another whole KG in just one month. He had an Ortho appt and his bones have become very fragile meaning we have to be very careful when moving him. He is at a high risk for fractures and breaks. This news was not unexpected. He has been one happy little man and we are enjoying every second of it knowing how fast things change. We also all survived our first cold of the season and managed to keep Oli out of the Hospital. Life is good!

Brothers!

Here are the pictures I promised of the Klawiter Brothers. Oliver loves Phin, at least he loves it when he cries. He seems to enjoy when his siblings are upset and crying. Typical big brother I guess. Oliver loves when Phin snuggles with him, he is very curious and becomes very still. Oliver is not a still kind of kiddo. Everyone is adjusting well, we are just getting used to a new kind of crazy. The biggest issue is that we have had some nursing shifts open that didn't get covered in time. It is a juggling act to maintain all of Oliver's vent and IV stuff with a newborn but we made it.
I know many of you are wondering if Phin is okay. As far as we know he is fine, just like all of our kids. Oliver is perfect in every way so if we are comparing him to Oli or the girls yes he is great. We have the option to do an MRI to see for sure but John and I both agree that the risks of the sedation are not worth it. If Phin starts to show signs then we will do it, but for now we are just enjoying our kids. I would be lying if I said it didn't cross our minds that it is a possibility. This is the official news as far as that topic goes. If we ever do learn something we will tell you all, so stop worrying.
Happy Halloween! We will have some pics of that I am sure.

Oliver checking Phin out for the first time. These are some cute brothers.



That's a lot of toes!


Our first attempt at a family pic with all six. Not sure I would say successful!


All four kiddos, don't the girls look thrilled?


The boys alseep in their chairs, life is good.


Phin sleeping and snuggling Oli's hand.


More sleepy boys living the life.

It's A Boy!

Phinneus Tyrone Klawtier
October 17th, 2011
11:33 A.M.
7 pounds 15 ounces 21.75 inches
Adina and daddy picked name. Middle name after Grandpa Tyrone Hanson


I think he looks just like daddy! Cute as can be.


Proud sisters, tomorrow he gets to meet his awesome big brother!


Proud mommy and daddy!


Silly sisters.

More pics to come tomorrow of the brothers meeting!

5

Adina finally had her Birthday and is now a big 5 year old! She had her party at the Eagles Nest (huge indoor playland in New Brighton) and all of the kids had a blast. Adina does not enjoy attention, so eating, the Happy Birthday song, and opening gifts was painful for her but once they got to play life was good. I think all of the kids slept pretty well that night. Cora is doing well, she thinks she is five. Everyday we drop Adina off at school she also tries to walk into the class and is very unhappy when we say no (she even took one of the nametags of a kid who was absent and tried sticking it on the door). Oliver continues to be our stud muffin. As we keep increasing his feeds, we are pleased to know that he has gained almost a whole kg, a little over 2 LBS! Way to go Oliver! He really is so amazing.
Baby will be here on Monday the 17th, assuming he or she waits until Monday, (a little more then a day) I will be induced. Life is good and busy as it is for everybody right now. We are busy getting all of our Halloween costumes ready. We have fantastic nurses that work with Oliver and they are all like family to us. They deal with our craziness and love Oliver so much, we are incredibly blessed and life is good. We will update Monday with the news of number four. More craziness to come!!!

Oliver in his rock star skull headband. He will be wearing this for Halloween. He will also have a Mohawk, we have been patiently growing it out.


Adina making a candle at the Renaissance Festival.


Cora and Adina by the fire truck at Falcon Heights fire station.


Cora sitting on her favorite seat, the baby! Also, she has discovered the art of picking her nose. Yes we are proud parents!


Adina and cousin Charlie at the Eagles Nest on Adina's 5th Birthday.


Cole, Brayden, and Adina at the party. These are Adina's good pals and possibly a future husband. There have been proposals!


Auntie Martha, cousin Arne, and Uncle Dude (Mike). I love this picture!


Cora admiring herself.


Adina finally gets a two wheel scooter. First trip out she flew off the sidewalk and got a pretty sweet knee scrape. She did not find it awesome at all.


Adina's ice cream treat from her small celebration.


Cora's grumpy face.