Two months!

Coraline is two months old today and it has gone oh so fast! Sorry we have not been updating as we should be. Coraline continues to be our little miss mellow and it is great! I think she is still trying to figure out what kind of family she came into! Oliver is in love with her and still thinks it is funny when she cries. Adina likes her but wonders why she can't play more.
Oliver is doing well with his regular ups and downs. We went to Hoffman over the 4th for some central air and quiet. Our apartment living is no longer working. Oliver's sleeping issues have made it impossible to live here. It is so loud and he wakes up to the slightest sounds (and stays up). It has affected our entire family as none of us are really sleeping, including the kids. We need a quiet space and are looking for a house to rent that is in our price range and that will meet the needs of a special little guy. Not an easy house hunt. We have added some new doctors to the list. Oliver saw a sleep specialist who is AWESOME! He understood our situation, not many people really do. Oliver only sleeps about 2-4 hours a day and no I am not exaggerating. We are trying new meds and also using Valium during the day for his severe irritability. So although it is not cost effective to rent a house we have become desperate, the body can survive with little sleep for only so long.
We are also seeing a palliative care doctor to deal with the irritability. Endocrinologist because Oliver has stopped growing height wise, and a respiratory specialist because he has been having some breathing issues. So it has been a busy two months of doctors. Oliver manages all of this better than anybody could. He is the strongest little two year old in the world, he just shows it in different ways. He makes us smile everyday just like our other kids. We continue to struggle with people giving us pity, there is nothing to be sorry about, Oliver is the best. Adina is now becoming a little possessive of who does his stretching, she wants to do it all with him!
Adina has successfully learned to ride her bike with just two wheels! With the help of her cousin Charlie and aunt Martha she is now cruising! We also just signed her up for preschool for the fall! I think I am going to have a very hard time dropping her off that first day! She is very excited and can't wait to buy a new school bag, but has already decided that she does not really want to eat a snack there. She has a weird quirk about eating in around a lot of people.
John starts internship in one month. We have been really enjoying his time at home and just having the summer spending lots of family time. It's the best!
Coraline will be baptized this Saturday, pictures to come eventually.

Bath time!!


Coraline is One month


Sleeping with my bear from Uncle John and Aunt Gail


The 3 on the 4th


My cool sunglasses


Oliver and Cora holding hands. That is Coraline's famous, "What the heck!" face.


Gillette Hospital had their St. Paul Fire Dept. festival. This is where Oliver has many doctor and therapy appts. They do so much to include the family and siblings. Adina and Oli got to play games and meet some famous people, like...


Miss Minnesota! Adina was more interested in the games.


T.C. the bear!


Cheese!


Two months!


Listening to guitar. Oliver loves listening to papa play the guitar. He sings along!


Adina and Oliver in their 4th of July outfits.


Adina helping her brother do some stretching exercises her own way! He liked it.


Next time we will post pictures of the bike riding and baptism. Happy hot summer!

Midnight Meeting

Oliver and Coraline are tag teaming us at night! Oliver is sleeping worse than ever, not because of the baby but because that is just the way it is. He will be having a sleep study in a few weeks. Also, another big eye appointment and I am praying for good news! He will have Botox injections in his legs soon to decrease some of the tone so he can stretch better. Busy month for little man. He is doing really well with Coraline, they will coo back and forth. John gets up with Oliver at night and I get up with Coraline so we usually have a midnight rendezvous several times a week! Unfortunately they are not extremely romantic as we are feeding the babes and not lookin so good! We laugh about it often and John now says good night saying, "Good night and Good luck!" Here are the pictures the hospital took of Coraline. I hope this link works for you.
So far we are all doing really well and loving our now family of five.
As John would say,
Good Night and Good Luck!

Coraline Shirley

After months of anticipation, Coraline Shirley is finally here! The day could not have gone any better! We were so worried that it was not going to work out to have the nurse at the house and John in the delivery room, but it was the perfect day! I checked in at 7am, started the meds to start my labor at 9am right after John got to the hospital. I was 3 cm at this point. At 10:30 I was 5 cm, 10:50 I jumped to 10 cm! I had to hold back pushing until the doctor got to the hospital, a few pushes later Coraline came out! Of course I had medication for pain or I am sure I would not be saying it was so easy! I have no problems sharing my weaknesses and I do not like pain! Coraline Shirley was born May 21st at 11:42am. 7lbs 13 oz, 20 inches long. She is a beautiful perfect baby just like her brother and sister are my perfect little sweeties. We are home now, time to see who is louder in the middle of the night, Coraline or Oliver?!

We picked the name because we liked it. There is a children's movie that came out last year and that is where we heard it--we still have to see it, though. Shirley came from my mom. So far we think Coraline is a good mix of Adina and Oliver. Adina is taking good care of "her new baby." Oliver so far is doing well with the change.











More pictures to come!

Spring or Winter

Spring has come to Minnesota. March and April were warmer than average and May is feeling more like winter with temps in the 40's! I was able to go two Twins games in the new outdoor stadium and it is great to have Minnesota baseball outside. Taryn is getting close to her due date and we are all anxiously waiting to see if she can hold out until her induction date. If she does go before this date there is a good chance that she will have a good friend (who also lives a few doors down) bring her to the hospital. Unless it happens when our nurse is with Oliver I will need to stay with him. I am not comfortable leaving him since he is so sensitive to different people and with all of his medical issues. This way we can keep him as happy as can be. We figure it will all work out some way, eventually that baby is going to come out!
I have told Taryn that I want her to stay at the hospital for the full two days. With Oliver she came home after one day but I really want her to get a lot of rest. We have decided to hold off on visitors at the hospital so she can rest, not that we don't want to show off our baby, just at a later time. This is also going to be a lot for Oliver to take in. He is very sensitive to change and this may just rock his quiet world! Hopefully it does not set off rounds of seizures, but he just needs to adjust. We are going to post a lot of pictures of the new baby, but for a while we are just going to have family confinement! I know this sounds strange, but if you come and live here you will understand. Too much action and different people in the house equals seizures and an unhappy Oliver. Visitors leave, but we all lose a lot of sleep from an unhappy Oliver. We will have a second nurse coming to the house to cover the 17 hours Taryn works with Oliver, so this will be an additional adjustment.
Our hope is that nobody takes offense to this and just understands. It is what we have to do to survive!
Adina is ready for the baby to come out of mommy already, although she may change her mind when it is actually out. I will be taking two classes this summer before I start internship in August.

Story time with mommy


Adina loves to race me to the tree and back.


Swing!! Mommy and Adina like to cheer, "We want a pitcher not a belly itcher." Adina finds this very funny!


Oliver likes to sit on the porch (mom's belly).


Adina really wants that baby out.


My Oli getting snuggled by my girls!

Party and Puddles

Oliver turns two on May 1st!! I can't believe my little guy is two, or maybe I can't believe we have made it through two years!! Guess it depends on the day. We had a small party for Oliver on Saturday. John and I were both anticipating the worst as Oliver does not really like a lot of stuff going on. He did end up having seizures at the end of the party and has been having them since. It just reinforces our feelings that from now on his parties will be just the four (soon five) of us. Not that we don't love celebrating with others, but it is Oliver's Birthday and a gift we do not need to give him is a seizure. He was in the ER last week for a quick visit, he has been biting his hands so bad that his hand was swollen twice the size it should have been. We got restraints so he would not be able to bite, yes, he loved them!! We also went to see another of his many docs who is following up with other docs from around the country about Oliver. Apparently some of his genetic tests have rarely or never been seen, so many are interested. They have banked some of his blood to do more tests in the future. This way we don't have to keep going in for random blood draws. There was much more from this doctor, but it would be a short novel if I wrote it all. She does feel we need to see a sleep specialist for Oliver. His sleeping situation continues to worsen. Five out of seven nights he will only sleep for about three hours and not nap the following day. Not sure how he does it really.
After Oliver's party there were some perfect mud puddles. Mine and Adina's favorite thing to do after the rain is jump in puddles of course! Nothing better than getting all muddy and messy. It is also fun to explore after the rain. Adina has been coming with to Oliver's therapy appointments at Gillette Hospital. I like having her there because she sees so many other kids in wheelchairs and their siblings. Today she went up to a little girl and said, "Hey, you have a really neat wheelchair." When we walked away she asked if she could get one like it! She also got to see one of the therapy dogs, Adina LOVES these dogs. Adina's newest career's in the, "When I grow up" game is a duck, teacher, piano player, rhino, piano (yes, the actual instrument), and a french fry maker at McDonald's. I told her whatever makes her little heart happy. That is what life is all about, happiness!!

Oliver finally crashed hard after his seizures. When he has seizures he sleeps like this everywhere. This is right after I changed is outfit, diaper, and fed him. He slept through it all!


YES!! Look at all this mud! We had to pour the water out of her boots after this.


Jump...

Jump..

Love the hair!





Snuggle time with daddy!


Birthday Cakes. Adina helped add the sprinkles. Clearly we are master decorators!


Opening the squeaky toys from Adina.


Adina loves to help her brother.

Spring

It has been a fantastic spring in Minnesota! We have already had many days in the 70's, which is just right. It has been so long since we have posted but I figure that only can mean good news. Oli is doing really well. Still has seizures but he always will. It is just kind of normal to have them every now and then. The big ones are scary, but we have the oxygen and other equipment and meds in the house so we are prepared. Adina knows how to silence the alarms and continues to want to help push his meds (with mommy helping) and is now pouring his food. It is not an everyday thing but when she asks I let her. I think it is very sweet the ways she takes care of Mr. Oliver and he loves her so much.
The nurse has been FANTASTIC!!! She comes twice a week and Adina is now asking when it is her turn to stay with the nurse! It has giving me a chance to do some days with just Adina and take her to do special things. Also, I have a chance to do things that I before took for granted. Like, doing laundry during the day, cleaning while Oliver is still awake, running to the grocery store during the day... things like that.
Adina is three going on 13! We are not always prepared for the attitude that comes with three. The time out corner has been getting good use lately!! It has been great to get outside where she can play with all of her friends and burn off all of that energy! She has decided that when she grows up she will either be a doctor or a turtle. I told her that whatever makes her happy, a mechanic, a teacher, an explorer, or a turtle I guess!
Oliver will start getting Botox injections in his legs at the end of June. It is to help reduce his spastic movements and help him stretch those little legs better. I am happy we are trying this before starting another medication.
The count down is on for baby number three. Adina asks the baby every morning if it is ready to come out yet! We have about 4-5 more weeks to go!!
Happy Spring!

We went roller skating with our church. Oliver took a spin around in his wheels!


Adina skating and falling. She refused any help. She wanted to do it, "all by myself!"



Oliver's new big boy carseat. Took a while for insurance to finally approve this huge thing! He loves it!


Maybe she really can be a turtle. I believe this is where the inspiration of becoming a turtle came from. The children's museum!


Adina's favorite part is the dinosaurs! Daddy apparently was excited too. John is not wearing make-up, Adina painted his face!


My favorite picture of beautiful Oliver.


Adina's first real haircut. She help my hand tight but after they gave her a sucker she wanted another haircut!


Easter! Family pictures are never easy.


Our two bunnies.



Strike a pose!



Painting Easter Eggs.


Very serious business.