March 29th, 2008

Happy Birthday Kinnick and Carver!!!!

Kinnick and Carver are 1 today. I can't believe that they're already a year old. Wow, what a year. They have come so far. We had a small birthday party with family. One of our new nurses, Marcy came to the party. She has been such a blessing. We finally got a really good nurse. She fits in perfectly with our family and she is so good with Kinnick and Carver. They both seem to really like her. All of our/your prayers for a good nurse paid off.

We didn't start the party till 7pm. Bob had to work today. Carver gets really sleepy after 6pm, so he cried a lot at the party, but Kinnick loved it. Her hands were burried in cake. She even got to sample the cake a bit. She just started trying baby food, so we were afraid to let her swallow any of the cake. We didn't want her to choke. Carver wasn't real interested, he was just too tired. We didn't get to open gifts today, so we'll do that tomorrow.

Here are a few pictures...
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March 24th, 2008

We have great news! Kinnick had her ABR hearing test this morning at St. Francis Hospital. All of the testing came back normal. This is such a relief. She still has vision issues, but she works very hard to use the vision that she was blessed with. I think God knew that I was going to really struggle with 2 blind/deaf children. He never gives us more then we can handle.

Thank you for all of your prayers!

Love,
Shanon

March 23rd, 2008

Happy Easter!

Carver is home and doing well. Tonight will be our first night with a continuous feed. This will allow us to double Carver's food/calorie intake.

While in the PICU a nice "Easter Bunny" stopped to deliver an Easter basket full of goodies for Carver. A group of people that got to know a little girl by the name of Kyrie Dawn Thome, a 16 month-old daughter of Jordan and Lacie Thome of Vally Center, Kansas, delivered the basket. Kyrie was diagnosed with a rare primitive neuroectodermal tumer January 2007. Kyrie was supposed to be in the Wesley PICU Easter 2007. The group got together to deliver some Easter goodies from the "Easter Bunny". They were going to deliver goodies to Kyrie and her friends that were stuck in the Hospital on Easter. When they arrived, they found out that Kyrie had already gone home with her parents and died the day before Easter. The group continues to deliver Easter goodies in Kyrie's name each Easter. To read more about Kyrie, you can visit her website at kyriethome.blogspot.com.

Kinnick and Carver spent last Easter in the NICU - they were only a few days old. Kinnick had her PDA Ligation last Easter. Needless to say, this is a much happier Easter for our family. We are so lucky to have both Kinnick and Carver home this year for Easter. Thanks be to God!

I hope you all have a wonderful Easter!

March 22nd, 2008

I love my bear!

March 21st, 2008

Carver is doing well with his feeds. If he continues to do well, he could be on full feeds by 2pm tomorrow. It is still possible that he'll be home on Easter. Kinnick is really missing Carver. She's just not the same without him. She's very sad a bedtime - nobody to kick. I think she kicks him just to hear him scream.

Both Kinnick and Carver were weighed today for their synagis shots. Carver weights 15 lb 14 oz. Kinnick weights 15 lb 10 oz. I was really hoping to be over 16 lbs, but with the tummy problems and the colds it really makes weight gain difficult. I'm looking forward to better weather. Maybe Kinnick and Carver can get out for their first walk. We only take Kinnick and Carver out of the house for doctor appts. They pick up enough colds, etc from our other children and the doctor offices.

March 20th, 2008

Carver is feeling a little better today. He is back to his home O2 (1/4 lt). They will start his feeds tomorrow morning at 6am. The PICU has been pretty empty, so nursing staff is 1 RN to 1 or 2 babies/children. This makes for much happier nurses and much better attention to the children. We're in an isolation room this time, so I feel like Carver is much more protected from anything that the other children may have. I'm not sure why we are in an isolation room, I'm guessing just because the PICU is so empty - a total of 4 children today.

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Kinnick in the big girl high chair... it makes her look so small...
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March 19th, 2008

Carver made it through surgery today like a champ. He's in quite a bit of pain and is up a bit on his O's, but is doing pretty good overall. He is NPO until Friday morning at 6am. They'll start small feeds and increase the feeds as tolerated. They say that he could be there a full week, but I'm hoping that he'll be home by Easter. I'm excited to see how big Carver gets once he doubles his food intake for the day. He lost weight this past month, so it is a good thing he's getting this surgery.

Thank you for all of your thoughts and prayers!

March 15th, 2008

Carver is starting to feel better. I was able to move him to 1/2 lt oxygen last night. Hopefully we'll be able to get him back to 1/4 lt by the first part of the week. He still has a snotty nose and a little cough, but is much better. He is scheduled to have his G-tube placed Wednesday. It stinks because now he'll be in the hospital on Easter and if he doesn't get out within a week, he could be there for his first birthday. Yes, Kinnick and Carver will be 1 year old March 29th. I can't believe they are going to turn 1 in the next couple of weeks. They still look so small and young.

Kinnick is still doing good. Hopefully she won't catch Carver's cold.

We still do not know if Kinnick and Carver will qualify for a medicaid card at the end of March. This is really bothering me. If they do not get their medicaid card, we will have to rely on our private insurance and will lose our nursing help. Seems crazy that the State thinks it's possible to get someone (not a nurse) to come in and take care of our children. I can't imagine many would know how to deep suction, do G-tube feeds, monitor oxygen saturations, etc... If we were poverty level, then the state would give us a medicaid card and nursing help. The Kansas SRS is under fire right now to resolve this - the current plan targets a specific audience and it shouldn't. They have till the end of March to revise this. Once it is revised, it will no longer be income based. Instead, everyone will be treated the same. They will recieve the service based on technology. So, someone poverty level won't receive the service unless he meets the technology requirement just like someone who is not poverty level. Right now, a poverty level person gets this when they have 1 technology. Someone that is not poverty level only gets the service if they have 3 technologies. The new plan will not go into effect until July 2008. So, even if it gets changed the end of March, the current plan is in effect until July. We're trying to get approved based on the current plan, but there is no guarantee. My understanding is that there are very few people on the current plan that are not poverty level - under 40.

March 12, 2008

Sorry that it has been a while. Carver has been sick. This is the first time that he has been sick since he came home from the hospital. He has a terrible cough and we had to increase his oxygen to 3/4 lt. This isn't bad considering what it could be. However, it delayed his G-tube surgery. They couldn't do surgery since he was sick. Since he has been sick, he doesn't want to eat (worse then normal). He's been taking about 8-10 oz a day. Yesterday was a better day and this morning has started off better. He took 5 oz his first feed today - So, things have to be getting better. We're hoping to get his surgery sometime next week. He really needs the G-tube to make up the missing calories during the day. I can't remember if I mentioned this or not... we started giving him bananas once a day - he loves them. Maybe he'll do better on baby food then he did on formula.

Kinnick is doing good. She's so happy and playful now. She's trying to make sounds and rolls to her tummy ALL of the time. I can't keep her where I put her anymore. She's holding her head really good now. She still will not suck on her bottle. This is really weird because before her last hospitalization she was taking her bottle. I'm not sure what happened here. She just wants to chew on the nipple. I think it might have something to do with teething. It's very frustrating and my speech therapist doesn't have any suggestions how to get her to suck again. I've been giving her a pacifier. It's really funny seeing it in her little mouth. She just chews on it. I'm hoping she'll start sucking on it.

Kinnick goes in on 3/24 for her ABR hearing test. I can't wait for the results. She's really acting like she hears, so I'm hoping for good news.

A few pictures below......

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Kinnick with her pacifier
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Kinnick working on holding her head up
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Kinnick in her bumbo

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Sleepy head - Kinnick (you can see part of her bad hair cut - courtesy of Wesley Hospital)

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Carver with his favorite nurse - Freddie

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Poor sleepy head Carver

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Kinnick and Carver at play

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I think Kinnick's winning this fight.

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I love my brother.

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Kinnick and Carver's Brothers and Sister

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Harrison (10), Hayden (2), Gregory (14), and Gage (6)

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Kirsten (18) with her life support - her cell phone

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Aunt Sharon (Mom's twin sister) with Carver

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Grandma Ashland (Mom's mom) with Kinnick

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March 2, 2008

Carver goes in to see the Doctor tomorrow. We are going to discuss getting a G-tube for night feeds. He only takes about 15 oz a day in formula. He's gaining weight, but not enough. I'm not even sure how he's gaining. It has to be the Karo syrup and Strawberry syrup that we're putting in his bottles to get him to drink 4 oz at a time.

Kinnick started rolling from her back to her stomach this past week. I can't put her on the floor anymore without her rolling over. Kinnick is getting over her cold. We managed to keep her home this time. It's so nice to see her lungs starting to show some improvement.

Kinnick are Carver are starting to hold their heads up more. Carver still droops his, but is doing better. Mechanically Carver's right eye is supposed to allow for 20/50 vision. His other eye and both of Kinnick's eyes are mechanically supposed to allow for 20/400 vision. However, Kinnick appears to be responding better to light then Carver. Kinnick looks at a light and shifts to another when a second light is presented to her. Carver shows no real interest in any lights presented to him at this time. Kinnick grabs, holds, and plays with most of her toys with no help. Carver has a couple of toys that he can hold briefly when they are handed to him.