April 30, 2009

Please Pray

Tim's dad had a seizure today while he was driving. He blacked out and wrecked his vehicle. He had an episode of this a year and a half ago and ended up having a brain tumor and needed surgery to remove it. He had scans a few months ago and nothing showed up. As of right now we are not too sure what's going on. He woke up enough to tell the ENT what had happened in the car, but then had another seizure and passed out.

I will post when I get new information. Please pray that they find out what is causing it and put an end to it soon.

Thank you!

April 25, 2009

Uncle Bruce lost his battle to cancer last night

I am very sad to be posting that my Uncle Bruce lost his battle to cancer last night. I am so devastated, but so happy that he isn't suffering anymore. I am even more excited to think that he is back in the arms of the love of his life, Donna. Donna passed away almost 7 years ago of ovarian cancer. The 10 years that they were married was the happiest 10 years of their lives. After she passed away, Bruce never let her memory fade. Any chance he had to talk about Donna, he did. It makes me smile to imagine the two of them back together again. Although we have lost a man with the biggest heart of anyone I know, it brings me peace to know that he is happy.

His services are Monday and Tuesday. Please keep our and Bruce's family in your prayers as we go through this difficult time.

We love you Bruce. Rest in Peace and give Donna hugs and kisses from all of us here.

April 24, 2009

Okay...so Max's potassium is HIGH. To the point that I am scared out of my mind to leave his side. High potassium can cause his heart to stop. The last level that we got this afternoon was VERY high, but the lab said that it was hemolized and the doctors didn't believe it. They said that if it was actually that high, that he wouldn't be kicking and playing around in the bed like he was (meaning his heart would have already stopped). Agh.... I won't even let that thought enter my head. We're not sure what's causing it to get that high, so they are starting him on a medicine that will help with it until we can figure it out. I am afraid to feed him anything by mouth with fear that I am poisoning him. I am picking the fruits and veges that are on the low potassium list, but I am afraid that maybe I am giving him too much since he is so little. I don't know, but no one else can think of what's causing it.

Max's phosphorus and calcium are both very high as well. Max has stumped the Director of Nephrology. This guy has a TON of experience and has NO idea why his levels would be this high. So, they have stopped his growth hormone to see if that could be causing it. There is also the possibility of trying to put something into his formula that may pull the potassium out. This will mean that we will have a lot more work with having to strain out what floats to the top or bottom of the milk, but we'll see.

I got all of my test results back yesterday, and I have high cholesterol. It's genetic, so it doesn't surprise me. It's not high enough for me to go on anything, I just have to watch my diet and exercise. On a more positive note, I am healthy enough to donate my kidney to Max! So that's exciting.

Max's birthday invitations have been mailed. I still can't believe that it's been a year already. CRAZY! I still have a lot to do, but I am having a good time with it :o) It should be lots of fun!

Prayer Request for the weekend:

My Uncle Bruce is still holding on, but is at St. Luke's on their Hospice floor. He has what is called lymphoblastic lymphoma. He has also developed several infections that have made him septic. The Hospice nurses are keeping him comfortable, but it may only be a few days or so before he passes. Please pray that he stays comfortable during his final days of life.

Please keep little Ms. Peyton in your prayers as she will be receiving her new kidney on Tuesday.

Have a great weekend everyone!

April 22, 2009

Prayer Request

We need your prayers everyone. I found out last night that my Uncle Bruce, who was diagnosed with lymphoma cancer, has been put into Hospice. I don't have too many details about how long their giving him or anything like that. My mom is going to be visiting him today, so hopefully I will have some updates later this evening.

I was originally under the impression that they caught his cancer early enough. But, from what I understand, Bruce was not tolerating the chemo treatment well. It was affecting his heart and breathing, so they stopped it and put him into Hospice. Is there not another form of treatment for those that don't tolerate chemo? It just seems bizarre to me.

Please pray for Bruce that he stays comfortable and God willing we find a miracle that this isn't the end.

Thank you everyone!

April 20, 2009

Positive (they think) TB skin test

Well, I went and had my TB skin test read on Friday afternoon and I did have some kind of reaction to it. They aren't too sure if it was positive or if it was administered incorrectly. I have to have the test repeated on Wednesday the 29th. They said that if that one comes up positive it means that I have been exposed to TB or some other type of bacteria. They know that I don't have TB because my chest xray was perfectly clear and I don't have any signs of it.

So, if this next one is positive I will have to take some kind of medicine for the next 6 months to be sure that I don't get TB later in life. AGH!

Needless to say, I am not too happy about having to do this again and I am a little worried about the results. I am sure everything will turn out fine, but I hate the idea of it.

That's all I have for you... nothing too exciting (or terrible). Have a great week everyone!

April 16, 2009

Mommy's Testing

I had my live kidney donor transplant workup this week. It has entailed me getting a chest x-ray (came back normal), EKG (came back normal), TB skin test (it gets read on Friday morning), 24 urine collection (currently in process), a physical (I checked out fine) and LOTS of blood work. I had to do a 2 hours glucose tolerance test today... 4.... count them with me...1....2....3....4.... NEEDLE STICKS! OUCH! I had to fast for 12 hours prior to the test, but by the time I was finished it was about 16 hours. I was starving and I have a needle phobia, but I didn't pass out. They should have all of my bloodwork results by early next week.

I also had to have a pysch evaluation and can you believe it she said I was good to go. I was personally very worried! (just kidding) Seriously though, she thought that I had the right mind set for the whole process. She told me what things I needed to start working on as far as getting the help that I will need after the surgery and things like that.

This week has made all of this VERY real. I would be lying if I said I wasn't scared out of my mind, but I wouldn't have it any other way. I mean, who wouldn't do this for their child? Why would I not do this? Fear isn't going to get the best of me. I keep being told that I am putting myself through a major surgery that isn't necessary. The open fetal surgery was the same thing though. I did that surgery to save my child's life and I am doing this surgery to do the same thing. Just because he is no longer inside of me doesn't mean that it's no longer my responsibility to do everything in my power to save him. I did everything I could to bring him into this world alive and I am going to make sure he stays that way.

Okay I am finished with that part of the week :o) I have some BIG news about Max.

Are you all ready for it? Are you sure? Ah...,I think I'll wait until next week to let you all know about this very BIG news about Max.

Okay.... sheesh. I'll tell you!

MAX ROLLED FROM HIS BACK TO HIS BELLY THIS EVENING!!!!!! Of course as soon as he did it he kicked himself back over to his back and started screaming, but he did it!!! He may never do it again, but he did it! WOOO HOOO!!!!


MAX STARTED WAVING LAST WEEK!!!!!!!!! It's not on a regular basis and he really has to think about it when he does it, but it's so stinking cute!!!!

One more thing...

Max jumped right back into eating like a pro after his surgery! His speech therapist is starting to talk about transition foods from purees to more chunky/solid. YEAH FOR MAX!

Can you tell I am a proud mama?

That's it for now. Have a great weekend everyone.

April 12, 2009

NEW Pictures and video!!!

Max two days after his surgery :o(

Max was supposed to be taking his afternoon nap. I went in to check on him and this is how he was laying...wide awake!

This is Max's cool new physical therapy chair. It helps him sit up better so that he can play with some of his big boy toys. He LOVES it, and so do we! Thanks Dan!

Max's first haircut

Max's First Easter. He looked like such a little stud!

"UGH...she stole my Easter egg!!!

A family of three on a beautiful Easter day

A happy Max after his First Easter Egg Hunt

Happy Easter Everyone!

Max is 11 months old today! I still can't believe that he will be a year old in one month. CRAZY! We can't believe how fast it has gone.

Max got his first haircut on Thursday. He looks so grown up, even though you can't really tell a big difference. Just a little off the sides, neck and top. He was getting a little straggly. I'll post pictures as soon as I find the cord that attaches my camera to the computer :o(

As you can see from Max's updated stats on the right hand side, he didn't grow in March. We are blaming it on the rough month that he had with being admitted for a PD trial, surgery and his feeds being held. There were also a lot of missed growth hormone doses due to my error in reordering it from the mail order pharmacy and him being in the hospital. Dr. Ben is a little concerned, but not to the point of jumping to anything drastic.....yet. If you remember from a post awhile back, if Max stops growing we will have to move forward with the transplant sooner than wanted. So, PLEASE pray that we have a BIG growth spurt in April so that we don't have to go down the not-so-friendly route.

Also, we need another minor pray that we have good weather for Max's birthday party. The guest list is already at 130 people and slowly creeping up even more. I know, I know.... it's just a birthday party! We may be going just a little (or a lot) overboard with this one :o) He deserves it.

Alright, so have a very Happy Easter and please say a prayer for the two requests above.

Oh wait... one more thing.... CONGRATULATIONS to Brett and Monica on their beautiful new addition, Jillian Rose. She surprised them by coming a couple of weeks early this past Thursday night. We all hope you feel better Monica. We're all praying for your new family of 5.

April 6, 2009

Not too much to report

It's been awhile so I figured I would get on and let you all know that Max is doing very well. He is still fighting the bug that he got while in the hospital. Nasty cough and runny nose. He doesn't act like he doesn't feel well though.

His heart rate is beautiful, you can't tell he is breathing when he is sleeping anymore, and his catheter seems to be working better as well. So we will call the diaphragmatic hernia repair and 8 days in the hospital a SUCCESS! Everyone seems to be very happy with it. He will have a followup xray, I believe next week, to see how things are looking. I'll keep you posted on this!

Physical therapy started back up last week and speech therapy starts back up tomorrow. Fingers crossed that he continues to like to eat.

We have some prayer requests:

Please prayer for Jared Shilds. Most of you have probably heard his story, but he was admitted to Children's Hospital over the weekend for a fever and severe leg pains. It ended up being a bacterial infection that almost took his life on Sunday morning. He seems to be showing a little bit of improvement today, but is still not out of the woods. They expect him to be in the hospital for several weeks.

Please put little Audrey in your prayers as she undergoes surgery tomorrow morning. She is having three procedure done that will hopefully give her mommy and daddy some much anticipated answers to their questions.

Please put little Noah in your prayers as he undergoes surgery on Wednesday.

I hope all of you have a great week! The countdown to Max's first birthday has officially begun! I can't believe it. What a year!