Friday, May 29, 2009

Tuesday, May 26, 2009

Our day at the Pulmonologist

Today was our appointment with Micah's Pulmonologist. It lasted TWO long hours. Shesh. Anyway here is what he told me.

Dr. S is 90% certain that Micah has CCHS (central congenital hypoventilation syndrome). Check out this website to find out more about CCHS. He also thinks that Micah getting RSV saved his life. If Micah would not of gotten RSV we would not of found out that he desats while sleeping, if he wouldn't of desated while sleeping we would of not found out that he had neuroblastoma (is common with CCHS) and poor swallowing abilities (related to cchs) and silent reflux( also related to CCHS). Dr S said he thinks that either Micah would of ended up as a SIDS baby or else we most likely wouldn't of caught the neuroblastoma as early as we did which in turn it would of most likely spread with a poor outcome. How crazy is this? For a long time it was hard for me to say that I was thankful that my baby got RSV, that he got sick and was in the hospital for 2 weeks, but now I think i am at the point where I can say Praise God for RSV!

So where do we go from here now that he is 90% sure it's CCHS?
Micah will be having another sleep study (this one overnight the last one was just a nap study)
Micah will be having another swallow study done.
Micah had bloodwork taken today for the genetic test that diagnoses CCHS. The results of this test won't be back for at least a month.
Dr. S thinks that most likely Micah will need to be seen at Rush Medical Center in Chicago one of the very very few places in the world that studies, researches, and specializes in CCHS. So I guess in the next two months sometime we will most likely be taking a trip up to the Windy City to meet with the dr's there and see what they think and what they think we should do next.

As of right now we have no idea what degree of CCHS Micah has (if this is for sure what he has). We are thinking, praying, and hoping that it's just a very mild form and can continue to be controlled with just supplemental O2 through his nasal cannula and through his c/a o2 monitor. All of this I will be able to share at a later date when we know more.
Please continue to pray for our little man. He is such a fighter!!! He is a gift from God and such a blessing and joy to be around!

Otherwise things with us are great. We are moving to Minnesota in 2 months and have ALOT to do before we move. We are looking forward to this new journey and experience that moving will bring. (not looking forward to the cold and snow though...)
Noah is doing great. He is such a ham and so sweet and flirts with EVERYONE! He is smart and funny. He is pretty much running everywhere he goes now and just growing so fast.

Seth is finally done with classes for the year!!! And I am just running around like crazy feeling like a chicken with it's head cut off. (yes I went there). But really i'm doing great! Looking forward to a spa day thanks to some WONDERFUL friends who got me a gift card to a spa!! Thank you thank you thank you!!!!


Wednesday, May 20, 2009

The Loves of my Life (minus Seth)

Noah: 19 months, amazingly clever, super sweet, ham, stinker, first born!!!

Micah: 6 months, second born, cuddle bug, squealer, medically challenged (at times), heartbreaker!

Monday, May 18, 2009

The results are in

The results are in and Micah's cancer is Stage 1. This is AWESOME!!! What does this mean? It means that it looks as though there is no more cancer in his little body, that the surgeon (guided by God's hands) removed the whole mass and it hasn't spread! There is a minor issue with the bone scan, the radiologist saw something irregular on Micah's ribs so we will be having another bone scan in June. The oncologist believes what the radiologist was seeing is just bruising from the surgery but the bone scan next month should confirm this. Please pray for clear scans. I'll let you know when this scan is scheduled.

Where do we go from here?

Well now we are on to trying to figure out why Micah continues to desat while sleeping. The whole reason we found out that Micah has cancer was because his pulmonologist had a CT scan done to see if it would show why he was desating while sleeping (desating is when your o2 levels in your body drop...a normal o2 level for a sleeping child should be between 95-100%, Micah drops into the 60's and fluctuates all night long while sleeping and during naps unless he is on supplemental o2). Micah will be seeing Dr.S (pulmonologist) next Tuesday afternoon where we hope to find out where we go from here. There has been talk that the next step is to have Micah see an Ear Nose and Throat Doctor to see if he can see anything that would cause this.

We also will be talking with the Speech Pathologist to see what she wants to do with Micah's aspirating while swallowing issues, he contiunes to use "simply thick" in his bottles to thicken it up so that he swallows correctly and with out aspirating. His last swallow study was done a few months ago and we are hoping that we can get him off of the "simply thick" soon. I truly believe another swallow study is needed to see if his swallowing has improved. I don't believe that it has though as if we try to lessen the amount of "simply thick" we put in his bottles he chokes and gags which most likly means he is aspirating it. Blah.

Thank you everyone for all of your prayers! We would not be able to make it through all of these trials without God and you all. We are truly thankful for all of our family and friends, even those whom we have never met!



Wednesday, May 13, 2009

i love it

The house is a disaster but really, i don't care. I don't have the time or energy to clean it. Instead my day consist of chasing around a toddler who just learned to walk two months ago and is almost running. (boy am I in trouble), trying to keep him away from anything and everything he is not supposed to get into because for some reason he is attracted to the "no no" things in life. I also find that in a day I become a broken record "no no Noah" "Noah no no", "Noah be gentle", "Noah you need to share", "Noah don't do that", "Noah can we find something else to do?" Oh and these are only some of the many many statements I find myself saying over and over again on a daily basis. In between running around after Noah I am trying to keep Micah entertained by talking to him, moving him from toy to toy, attempting to teach him to roll (why won't my six month old roll???), oh and I also change wet and poopy diapers....all day long! Some may question why my house is a mess...well just come over and hang out for a day and you will begin to understand my life...but you know what...I LOVE IT!! I love my life, my kids, my husband, my family, and yes even my annoying dog. We may have some stressful things going on (you know Micah and his cancer and all), but I wouldn't trade my life for anything...

Tuesday, May 12, 2009

I apologize

I apologize for not updating sooner. Friday went GREAT. The wonderful anesthesiologist got the IV in on the very first try and taped it on really well so that it wouldn't come out! Prayer of thanks for this as because they got the IV in they didn't have to do a Central Line!!!! How awesome is that!!!!! The bone marrow aspiration and bone scan went well. We got to the hospital at 6am and finally got to leave at 2pm. It was a long day!!!!! We haven't gotten the results from the test yet but should get them this week! I am praying and asking you all to pray that the results come back showing no cancer! How awesome would that be?!!!!!
Otherwise life is going pretty well. This week is the slowest week I think we've had since Micah got sick back in Feb. and was hospitalized with RSV. We only have one appointment scheduled for this week and it's only with his GI doctor for a check in! As of right now we only have his six month well baby visit scheduled for next week. How awesome is that...a well baby visit instead of a sick baby visit! It may not seem like a big deal to some but to me it is encouraging! Also Micah's blocked tear ducts seem to be cleaning themselves out and opening up as he hasn't had any junk come out of his eyes in three whole days!!!!!
Noah is doing wonderfully as well. He is such an amazing big brother. Yesterday he gave Micah two very sweet kisses. He is so loving and fun to play with. I've had to tell him a few times to stop running in the house (LOL) as his walk is getting much faster than it was only a couple of weeks ago!!!!
Seth and I are doing well. Tried of all of this and ready for everything to be over. Seth's last week of school is next week until we go on vicarage at the end of July! We are definitely looking forward to moving and starting another year. But we are sad that we will be leaving so many wonderful people!
Thank you all for prayers. I promise that as soon as I get the test results back I will update on here for all to see. Pray for good results...cancer free results!!!!!!!!!!!!!!!!!!!!

Thursday, May 7, 2009

Central line and bone marrow aspiration

Tomorrow Micah will be having surgery again. This time they will be putting in a Central Line and doing his bilateral bone marrow aspiration. I just found out about this today, this afternoon. So the last few hours have been kinda nuts, wrapping my head around the thought of him having surgery again, so soon after the mass removal. I worry about why the dr has decided to go ahead and put in the Central Line. On Tuesday Micah was supposed to have test done but after 8 failed attempts to start an IV the test were canceled and we were told they would be rescheduled for another day. The nurses in the APC unit talked to Dr. H and asked him about a central line and he said then that he didn't want to do it yet because he wasn't sure that Micah would need it. Then today we get a call from Same day surgery saying Dr. H has requested a central line be placed. WHAT? WHY? We have no idea right now. I am hoping that he just feels bad for poor Micah and doesn't want him to have to be poked a million and one times again. I fear though the worst of course but hope for the best. I am praying that the mass that was removed was "favorable" instead of "unfavorable" because unfavorable most likely means a few rounds of chemo while favorable could mean we are done. So anyway, I am most likely just worrying about nothing, but should find out tomorrow more. Please continue to keep our little guy in your prayers.



Tuesday, May 5, 2009

No test done today

Micah was supposed to have his bone scan and bone marrow aspiration done today. Neither happened. For two hours the nurses and dr's tried to get an IV started in him so that they could give him the contrast for the scan, after 8 attempts of getting the IV in and then the vein blowing they gave up for the day. THANK GOODNESS!!! It was absolutely horrible sitting there watching them poke him time and time again while he was SCREAMING!
As a mom I just want to protect my kids from pain and injury. I would do anything to keep them from getting hurt. So what am I supposed to do when he has to have an IV in order to see if he has cancer anywhere else in his small body but the only way to get an IV in is to hurt him. Micah looks to me as a source of comfort and I was unable to comfort him. He looks at me to protect him and I allowed these people to hurt him time and time again. I feel like i'm stuck between a rock and a hard place. In order to make sure he stays healthy and okay I have to allow them to hurt him. This is the part of being a parent that sucks.
I've had allot of friends tell me that I am so "strong". But really i don't feel it. I have to pull myself away from my emotions in order to be there for Micah. I have to be calm when all i want to do is scream. I don't know that I would call this being strong, i think i might call it more, being numb. All the while that they were poking Micah I wanted to scream and just pick him up and run away with him. But...I had to make the decision to appear heartless and try to "calm" him while they were hurting him. Maybe some people wouldn't look at this as being "heartless" but to me that is what it feels like. I feel as though I shouldn't allow others to hurt him, but to make sure he is okay they have to cause him pain. Sorry if this is so jumbled but I am so conflicted and confused right now. I just want this all to be over. I just want to have the dr's and nurses poke me and run the test on me instead of Micah.
As I sit here I feel my heart breaking, and aching. Today wore me down. I've stayed "strong" for so long, and plowed through this horrible nightmare, and today I feel beaten.
I;ll try to post more later, Micah is waking up and I need to go comfort him because at least I can do that now.

Monday, May 4, 2009

Bilateral bone marrow aspiration and bone scan

Tomorrow Micah will be having a bilateral bone marrow aspiration and bone scan. Blah. Yes they will be putting him "under" for the 5th time in something like 4 weeks. My poor baby!!! He is a fighter though, he will do fine, this I know. He has shown us time and time again that he is strong. I'll try to update what the test say as soon as we get the results. But for now i thought i'd leave you with two pictures, one of Noah and one of Micah!!!