Vicissitudes

We all took a trip to Darien Lake yesterday. Everyone had a blast especially in the water park.

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Family and friends,

We just wanted to update you on what is going on this week with Riley. First of all, we could really use prayers, as these tests are painful and scary for him (and us). We won’t go into true details but one of the tests is an injection in his arm, wait 2 hours, then strap him to the X-ray table to get video and images. This test is on Wednesday (tomorrow) and is called a renal scan to check the actual function of each kidney. The last test this week is the urodynamics on Friday. These tests the bladders function and, again, reflux into the kidneys. For this test, they insert a catheter into his uretur while Riley is strapped down to the X-ray table, fill his bladder with dye until it is a little over stretched, and then watch him urinate by taking video and images. This test takes about ½ hour on the table not including prep time.

There is an MRI of the spine to come, but we haven’t made the appointment yet.

Todd and I need prayers of strength, as we have to watch this and Riley does not understand why we would strap him down and “hurt” him. We can’t break down in front of him. Please pray that we have the strength we need and that Riley can come out of this entire journey ahead of him still, unharmed (emotionally, mostly). Also, for his siblings to find understanding, as all they know is that Riley hurts when he’s in the hospital. They just know this, we don’t tell them that but he does come home not feeling well at all (children are very smart!). Caleb told us the other night, “I don’t want Riley to have to hurt.” And Isabella was worried as well, saying, “Please don’t bring Riley back to the hospital.” Noah said, “Please don’t go to the hospital every day! I really miss you when you are gone all the time! And I don’t want Riley to be there!” So, it is affecting our whole family. Please pray that we find the right things to do and say and so that it may be possible for us to balance life at home and in the hospital once surgery is scheduled (they will schedule surgery after Friday’s test is complete).

Thank you very much again for all of your spiritual support (and otherwise). Thank you to those who have never given up on us!

With Love,

Todd, Danielle and the Paterek family

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The weather is breaking and that means baseball for most Americans. Not me but my two oldest sons are starting T-Ball this year instead of soccer. I am happy to see them having fun but enjoy soccer far more. Either way, like the good dad I am, their first game I took 368 photos – Almost a movie at times. I cut that down to 22 photos to post. They are here. You can also look under children to find the gallery. <edit> Photos have been removed.

The boys have their friends on the team with them and my daughter has her friend (My boy’s friend’s sister) so she is happy. Even with her friend there she spends a lot of time watching and enjoying the game. Hope you enjoy the photos!

Hmm? A new button with the upgrade! I guess I can give a slide show in the post!
Don’t you love WordPress and Alex Rabe!?  (my part to promote the best blog software and the best Gallery – and both are free! – Thanks guys!)

<edit>While I loved NextGen Gallery I had to remove it for now.  It just doesn’t have what I am looking for.

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So I’ve been away for a while, things have been happening.  I don’t really feel like writing right now so here is a list.

1.  The boys started Baseball
2.  Riley needs another Surgery
3.  Riley needs more tests – not fun.

So that’s not much but it’s what is on my mind.  Until something interesting comes along it will have to do.  I did add some photos under the PhotoPhone section.

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Last Friday Riley wanted a little extra attention so in the way he knows best he demands it with another issue for us to deal with. He’s a great kid but after two days of wheezing and a quick call to his Doctor’s after hours line we were off to Children’s Hospital. As usual, we waited forever! Finally, we were able to see an intern who first said he had the croup. Knowing better we insisted on getting the RSV test. Sure enough it was positive. He got a steroid and instructions on the nebulizer again.

Today he is doing fine. He always has a great positive outlook on everything! Through the entire night there (from 10pm to about 1am) he was happy and playing, having fun with everything.

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A few snapshots before the “photo shoot”. I spent too much time editing and uploading so I’ll let the photos speak for themselves.

<edit> I removed Nextgen Gallery.  I just doesn’t have the look I want.

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March 07 my son had his final surgery!  The day before was difficult as he had to have bowel prep.  This is a day long process where they give him “go lightly”.  Everything is flushed out!  He could not eat, couldn’t sleep and was basically miserable.  I felt so bad because he did not understand why we were not feeding him, he just knew he was hungry and Mama and Papa did nothing about it.

One of the hardest things for a parent is to hand over their child and give up all means of protection for that child.  The Doctors and nurses at Buffalo Children’s Hospital are outstanding but they are not us.  With tears, we gave him to the nurse and began our three-hour wait.  At least the Sabres won!

He came out of the surgery as we expected in pain.  Morphine helps but it just is not the same.  Here is his scar, not very gross. 

Those are spacers they keep the incision open to allow any infection to come out.

A full day after the surgery he was his old self again.  I cannot believe how quickly he recovers from surgery.  That is not quite a smile but he was smiling already.  We had to try to keep his activity down as he wanted to start playing again. 

Here is his usual smile!  I think this was taken the day before we went home.

Five full days in the hospital, and three and a half days after surgery, he is ready to go home.  After all the discharge processes we headed home. 

He lost a pound or two in the process and looks tiny again.  We need to start bulking him up again.  The good this is that he is home, back to the zoo with his brothers and sister!  We are trying to keep his activity down but that seems impossible.  I cannot wait for his Physical Therapist to see him because she said he would loose a lot of strength and regress in his abilities, Nope!  He is picking up at the same point he was before the surgery.  Crawling, sitting, almost standing all at nine months with four abdominal surgeries. 

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I’ve been putting off posting this because of fear of other judging us with all the issues my son had these first few months of his life.  Believe me, the judging will come for us from family, friend, etc.  However, I just cannot hold back anymore.  We are once again expecting another child to add to the four we have now. She will be our second daughter.

I am sure many are thinking, “Why would you want another child with all the issues you had with your son?”.  Well, I do not know.  All I know is that with every child our lives become more and more blessed, exciting, frustrating and rewarding.  That reminds me I have a rant I need to post sometime.

We are naming this daughter after my wife’s great aunt (Vincenza).  Her aunt was a very powerful influence on our lives and recently passed away at 92 years of age.  She laughed to the very last day.  I always called her my little girl.

Anyway, I know there will be more posts coming on Vincenza so I must end here.  I put this under “The Miracle” category, the reason will become evident in my next posts.

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I am sure everyone has already heard about the new “scare” on bisphenol-A leaching from the clear polycarbonate plastic baby bottles made by (Dr Browns, First Years, Avent, etc.)  I admittedly began to worry as well, especially because all four of my children have used or are using these name brand bottles.  All my youngest son needs is another issue, right?  After a bit of research I found that the leaching is caused by excessive heating at or over boiling point (212 degrees Fahrenheit / 100 degrees centigrade).  Since we normally use breast milk my worry diminished.  Furthermore, the formula we use is never boiled and we do not use water that reached boiling point.  The best way to warm a bottle of breast milk is to slowly bring it to or just above room temperature.  The low temperature preserves the fats and nutrients in the milk and because of the low temperature; the leaching is not an issue.  Here is an outstanding PDF published by the Commonwealth of Massachusetts Department of early Education and Care that shows best practices for feeding your children. 
http://www.eec.state.ma.us/docs/TAHandoutBabyFoodSafety.pdf

Another bit of the warning suggests not storing any breast milk or formula in the bottle.  This is sound advise for many reasons not least of which breast milk goes bad rather quickly. Who would want to give their child bad milk?

If you use the bottles in normal fashion there should be no issue. Warm slowly in warm water, do not boil the bottle and never store milk or formula in the bottle I will not worry. Well, okay I am going to worry a little. It seems that the research is not 100% conclusive yet but I will need to do a little more research, make a few calls and try out the alternative bottles available.

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It never seems to stop.  My son started coughing the other evening nothing serious so I did not think much of it until I noticed a bit of a wheeze and the coughing becoming more frequent. 

Several months ago, his doctor tried to get him a series of shots call synergy (or something).  These are expensive shots to prevent the RSV from hitting or at least hitting too hard since this could be a very serious condition.  The insurance did not approve the shots. 

Just our luck, when all was turning around he gets it.  I was ready to take him to the ER (or ED whatever it is call now).  Trying not to panic I called his doctor who was not very worried even considering my son’s medical history.  To me, he sounds like an old man who smoked his whole life hacking away bring up some disgusting piece of lung, combined with the worst asthma you can imagine. 

I took him to see the doctor yesterday (the following morning).  Yes, my son’s doctor does make special visits on Sunday’s (any good doctor would).  After a quick look he said it is RSV and gave a nebulizer treatment.  After, you would not believe the difference.  He sounded and looked great.  He said to keep an eye on him but he should be fine. 

We had a surgerical appointment scheduled for this morning.  Knowing how careful they are with our son we again expected him to be admitted to the hospital.  But no, they made nothing of it.  “Yes, he has the RSV.”  That was about all we got from them.  You might be thinking I am complaining that nobody is helping my son but I am not.  It seems that while this could be rather serious, for the most part it is not as bad as a parent might think. Now I have to write a disclaimer so nobody takes this post as medical advise. 

Well we have about three or four more days of wheezing and nebulizer treatments and thirteen or so for the coughing.  This will push off his surgery about two weeks.  Not much, we can do except ride out the virus.

Disclaimer: Do not take any part of this post as medical advise.  Always consult your doctor if you or your child looks, feels, or acts sick.  NEVER TAKE A CHANCE!

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