I wish….

 

I could say that this is the way Micah looks right now. Crawling around on the floor of our house, working on walking but alas right now this is not the case.

Right now little Micah is laying in his hospital crib in the PICU of the local “children's” hospital feeling pretty puny.  The nurses have been wonderful to him and are working on managing his pain as much as possible.  We have been treated exceptionally well (hint: to be treated well you can bribe the nurses with double cheeseburgers from McDonalds…lol) 

Micah did great during surgery.  The ENT pulled out his tonsils and adenoids and was able to extract some fluid from his lungs for further testing.  We should hopefully receive the results in the next few days of what the fluid in is lungs look like. (to be totally honest I am not even sure what they are looking for, i’m just trusting them). 

As long as all continues to go well Micah will be breaking out of this place tomorrow sometime.  Please pray that he gets to go home as we all do much better when sleeping in our own beds! 

As for Noah, he is getting some wonderful one on one treatment with Papa Flick!  He is having a blast, playing trains and cars! 

Thank you for your prayers.  I hope to have good news of breaking out of here tomorrow.  Until then I sit and reflect on Joshua 1 vs 9. 

Blessings

Melinda

this little guy

 

will be having surgery on Monday to have his tonsils and adenoids out.  Please pray that all goes well and that he is in the least pain possible.  Micah will be staying the night in Peds ICU for one night to watch for bleeding and complications.  I will update how he does later!

Blessings

Melinda

The Boys

Just a little post to update on the boys:

Noah:  Turned 2 on 10/10/09. 
He's amazing.  A very busy, energetic two year old who is loving, sweet, yet 100% boy!  He LOVES all things trains right now...mostly Thomas the train! 
Noah has been behind on his talking so we had a hearing test done which showed decreased vibration in his ear drums...a second hearing test will be done on Friday to see if there is any change in vibration.  If he is still having decrease vibrations we will have him seen by an Ear Nose and Throat doctor.  Due to his slow speach is in the process of being evaluated by Rochester Early Intervention Program to see if he is in need of speach therapy.  Good news though...his speach has increased dramatically in the past 2 months.  He is finally beginning to put 2 and 3 words together and says well over 100 words on a regular basis! 

Micah:  Turned 1 on 11/13/2009
Also an amazing little boy!  Micah is close to walking, we expect that to happen very soon!  He is talking up a storm for a 12 month old and never ceases to amaze us with what he repeats!  Some of his favorite words are "Bye Bye" "Hi" "Tickle Tickle" "Go" "Thank You"...just to name a few. 
We contiune to be confused with Micah's medical situation.  Micah contiunes to have destats while sleeping and uses supplimental o2. 
He had a sleep study last night and we received the results today.  Unfortuantely Micah's nasal cannula isn't providing enough help with his breathing while sleeping so we will be switching him to a cpap machine or a bipap machine...most likely a bipap.  He contiunes to underbreath causing his co2 levels to rise.  His sleep doctor wants him to meet with a nurse tomorrow to start getting him used to the mask and then we will see the Ear Nose and Throat Dr to see if he needs his tonsils taken out (he has obstructive sleep apnea).  This appoitment is next Tuesday.  On December 18th he will have a follow up sleep study (this will be his 4th in less than a year) to get him acclimated to the new machine. 
We are still without a dignosis, still confused as to why he is struggling with all of this but we are thankful that it is managable right now...we pray it contiunes to be managable! 

Seth and I are doing alright.  We are exhausted and frustrated with Micah's situation.  We both wish Micah was healthy and didn't have to go through alll of this but we are so thankful that we are here in Rochester with the help of the wonderful nurses and doctors at Mayo!

Please contiune to keep Micah in your prayers (as well as the rest of us) as he contiunes to have test run in order to figure out what is truly going on in his little body!  I hope to have more answers to questions after next Tuesdays appoitment with the ENT.

Blessings

Melinda

A little bit of this and a little bit of that...

Yes yes I know it's been quite some time since I last updated or wrote anything on here...my greatest apologies.  Life has been rather busy for us here in Minnesota.  We are truly enjoying it here (ask me what I think of MN in a month or two when we are drowning in snow). 

The boys and I (Melinda) have been keeping very busy.  Currently we go to two different classes/groups during the week...soon to be three.  On Wednesdays we spend the morning at a church in Bible study...okay well the boys go to their wonderful daycare they have for the moms while I go to Bible study and hang out with some amazing women!!!  The boys seem to enjoy the time with other kids and I definilty enjoy some adult only time!!!!!!  Thursdays Noah and I attend a toddler/twos class (as he will be two in less than a week...ahhhh!).  Noah and I hang out, play, and sing songs together for a while and then the kids go and play and the parents get to talk and dicuss current issues going on with our children lead by an amazing facilitor.  During this time Micah goes to "Sibling care" where he gets to play with another little boy who is the same age as him!  Starting at the end of this month Micah and I will be starting a class on Tuesdays called "tiny toddlers" where we will play with other kids his age and Noah will go off to "sibling care". So yes we will be busy Tuesday-Thursday.  On top of these awesome activites we are meeting some wonderful friends whom have kids the same age and we are doing "playdates". 

Micah is doing pretty darn well.  He is almost 11 months. He has been crawling up a storm (army style).  Pulling to a stand and cruising around the furniture...i see walking in our near future.  SCARY!! (Noah didn't walk until 17 months!).  He also has a tooth and a half (yes they are slowly but surely coming in). And is turning into a HORRIBLE sleeper.  He has totally given up his morning nap but along with this he has been waking for HOURS in the middle of the night allowing mommy and daddy to get great..i mean HORRIBLE sleep cause when Micahs awake so are we. 

Micah was supposed to have a sleep study a few weeks ago but we had to cancel it and need to reschedule due to a cold that we have all been wonderfully blessed with.  (grrr).  Micah now has glasses (not sure if i've shared this in previous post).  He has been cancer free since April!!!!! Praise God!!!  We will have another CT scan sometime this month to make sure all is still going well.  I think that's all for now on Micah.

Noah is going to be TWO on Saturday.  AHHHHHHH!!!! I can't believe it.  Although his attitude sure shows that he's two.  We've had some majoy independence needs lately along with a few tantrums (still).  In the last few months he has begun talking ALOT more and says about 50 words.  We just had his two year dr appoitment on Friday and he is now 35lbs 4oz (down three lbs since his last appoitment) and is 3ft 1 inch!!! He's is finally chartable...he's still >97% but still at least he's on the charts!  We will be having a hearing test in a few weeks for him because of the way he speaks..we just want to make sure it's not caused by hearing issues.  He will also be seeing a  sleep study dr because he "snores" when he sleeps...just for a consult and make sure that all is well with him.  The dr. is just being a little bit more cautious because of all of Micah's history! 

Seth is doing great.  (aside from his cold as well).  He has jumped into his positon and is enjoying it!  He's very busy but is making time for us as well....doing a wondeful job at that as well.  He contiunes to be the most amazing dad and husband!!!

I am also doing well.  Staying busy.  The boys keep me on my toes. 

I'll try to upload a picture later...gotta get ready for church!!!

Blessings

Melinda ;o)

Uh Oh

Micah started army crawling today! I thought I was looking forward to the day that he became more mobile but now I am dreading it! It's hard enough to keep up with Noah running around all over the place but now I am to chase after Micah as well! On the other hand it is pretty darn cute and he's so excited to have finally figured it out, he pulls himself forward and then squeals in delight! Hopefully i'll be able to get a video of it soon and then i'll post it on here for all to see!

Micah had his 9 month well baby appointment on Friday. I truly enjoy well baby appointments, I go in there not worrying that they will tell me something else or that we need to run some other test. This appointment did not disappointment me! I found out that Micah is weighing in at 23lbs and 4oz and he is 28 inches long...he is in the 75% for everything! He is developmentally on track! He only had to get one shot! We have been referred to a pediatric optomologist though due to his "horners syndrome" in his left eye. If you remember (or don't that's okay) after Micah got through surgery his eye became droopy and the pupil doesn't react the way it is supposed to. The surgeon said that due to the location of the tumor it is possible that he nicked a nerve while removing it, this nerve controls part of the eye. We were told it should correct itself within three weeks of surgery, well...it hasn't fixed it self so we are off to the oncologist on Friday to check and see if it has affected his eye sight in this eye at all. Otherwise we don't need to return to the pediatrician until November when Micah turns a year!

This coming Friday we have an appointment with the pulmonologist in the morning and then the optomologist in the afternoon. Should be a busy day but we are hoping to find out if Micah is going to do another sleep study any time soon and what else (if any) test this pulmonologist thinks need to be done on Micah (we are praying none and that he says he's gonna grow out of it...that's what we hope at least!). Then the following Wednesday Micah has a follow up with his oncologist where we should find out the results of his next urine test...we pray that the numbers go down into "normal" range instead of "up" as if they begin to climb we may have more testing needed in order to find out what is going on.

Noah is great...busy as always. Nothing really new with him other than he's starting to say a few more words! *FINALLY!

Seth and I are doing great. Seth is super busy of course with vicarage. I am enjoying the weather here in MN and loving the town!!! The boys and I will start some parent/toddler classes twice a week starting in Sept!

Blessings

Melinda

It's been a while

I know it's been a while since I last updated the blog. Alot has been going on in our lives for the past month or two. We have moved to Minnesota and are pretty much settled into our new house which we LOVE!!!! We are enjoying the town and have found many really neat, close parks that the boys (well Noah) really likes. The boys and I are also enjoying the beautiful weather and go on walks daily, exploring the downtown and finding fun adventures to go on!

Noah is now 22 months and getting bigger and more talkative by the day. I cannot believe that my baby is going to be 2 in 2 short months. He says between 15-20 words which is considered "behind" from what i've read but we aren't too concerned as he definitely lets us know what he wants in one way or another.



Micah is also growing very quickly. He just turned 9 months and will be having his 9 month well baby appointment on Friday! These appointments are the ones I actually look forward to as they generally are easy and we hear about how well he is growing! Micah had his 3 month post surgery CT scan two weeks ago which came back GREAT...he also had his blood taken and a urine test done. The blood work came back great and the urine test was "so so". I'm not sure what it all means or stands for but what I do know is that one of the numbers on the urine test is supposed to be 35 or lower...before Micah had surgery to remove the tumor he was in the 20's which is great, but this last urine test came up at 41. What does this mean? Well it could mean nothing at all or it could mean that his body is hiding more neuroblastoma and we haven't found it. His new oncologist here in Minnesota isn't too worried about it but instead of going back in three months we will be going back monthly for urine test and follow up appointments to keep an eye on the levels and make sure they don't go up any higher. Please pray that the test was just extra sensitive and easily messed up and that his numbers are lower when he goes back in two weeks!
Otherwise Micah is busy busy busy. He's not crawling yet but getting very very close. He has his own personality for sure!
Thank you for all the prayers, please keep them coming!!!!
oh and Micah will see his new pulminologist in about a week and a half.

Blessings

Melinda

Sleep Study Results and where we go from here.

Micah's pulminologist Dr. S called this evening to let us know the results of Micah's sleep study that he had done on Tuesday. Good news. Micah has improved. :o) A few months ago Micah had a nap study done these results came back showing that Micah spent 34% of his sleeping time with a oxygen saturation below 90% (he should be above 95%), this last sleep study came back with results of him only being below 90% for 4% of the time!!!!!! That's a 30% difference! Yeah!

Dr. S said that Micah is improving yet he still doesn't know why Micah desats. There are two things that happen while Micah sleeps one...is central apnea where he actually stops breathing (this is controlled by the brain) and the second is obstructive apnea where something obstructs his airway while sleeping and causes his o2 to drop.

Where we are going from here? Well let me tell you, we are moving in 4 1/2 weeks and the next 4 1/2 weeks are going to be very busy it appears. I am wanting to get as much done here as possible for a couple of reason...one...I trust Dr. S and his judgement. two...we have childcare for Noah here usually and I know no one up in Rochester who could watch Noah while I take Micah to test. three...I don't want to wait for answers...i am not being patient and I want them NOW!

So...Dr. S feels it is important for Micah to get an MRI of his brain. Micah has a few different issues going on with him aside from his breathing, he has poor swallow which causes him to aspirate, he has silent reflux with aspiration, and he has had neuroblastoma. All of these issues along with the central apnea are controlled by a certain part of the brain and the autonomic nervous system, an MRI will show in detail different areas of the brain to see if something is going on/wrong. This will hopefully be set up for in about a week or so. Dr. S also would like an airway evaluation for Micah as well. We see Dr. S on Tuesday and will find out where else he would like to go from here.

Please please pray that all goes well in these next 4 1/2 weeks. We have a lot to do on top of packing and moving. Pray for the strength to do it all. Please pray that Micah continues to get better!

Otherwise we are all doing pretty well. It's so hot here already, we are looking forward to cooler MN days and nights!

Blessings

Melinda

Micah, Noah, and Their Good Buddy, Jacob

Praise and Thanks yet confusion and frustration

Micah had his bone scan yesterday and it came out wonderfully!!!! The nurse got the IV in on the second try!! Praise the Lord! And the results came back showing no cancer in his bones!!! Praise the Lord!!!!! God is good! So for now we are in the clear until we have another CT scan in August.

We have been awaiting the results of Micah's gene testing for CCHS. Well we received these results this morning. Dr S called and let us know that 90% of people with CCHS have a gene mutation and Micah does not have this gene mutation...prayer of thanks!!!! The confusing part is that we still have no idea what Micah has. Dr S says he still thinks that Micah has some for of a disease like CCHS but he doesn't know what. Micah is still requiring supplemental o2 while sleeping. He has a sleep study on Tuesday night so hopefully this will bring answers. I pray for answers! I think the hardest part about all of this is not knowing! If I knew what was going on with Micah I could deal with it, learn to live with it, but right now we are in limbo going to test after test. So for now our trip to Chicago will not be happening (which is fine by me).

I hope to have more answers after his sleep study on Tuesday night.

Until then...please continue to pray for Micah and for his recovery...i wish this journey of tests and confusion was ending but it doesn't look like it will anytime soon.

I am exhausted. Worn out...confused and sad. I have this child who appears perfectly healthy on the outside, who meets all of the developmental milestones, who is growing amazingly well, yet is still sick and in need of extra o2. I am ready to know what is going on, ready to deal with whatever is thrown my way, ready to live a more carefree life with my children...but until then I guess i'll just be exhausted...just still moving forward...cause that's what a mom does!

Blessings

Melinda

Bone scans and sleep studies

Starting next week we will be having more scans and test done on Micah. Oh the fun begins again. On Thursday the 11th Micah we have a bone scan done to make sure that he is cancer free...at his last bone scan if you remember the radiologist saw "something" on Micah's ribs...the oncologist said most likely it was just "stress" on the ribs from surgery but...we will be rescanning him on Thursday to make sure! Please pray that the scan comes back perfect and that no tumors pop up on the scan....but also pray that if there is a tumor or any cancer in his little body that it does show up on the scan...does this make sense? I guess I am just asking for prayers that he is cancer free but if he's not that it shows up. Oh please also pray that the nurses get the IV in on the first try...he is a HORRIBLE stick!!!!

The following Tuesday (the 16th) Micah will go in and have a full sleep study done. Seth will be taking him to this so I can actually get a full nights sleep!! I am sooooo excited, yet sad that I won't be there with my little one...i've been with him for EVERY test he's had done so far (and he's had ALOT). The sleep study is going to be done so that the Pulminologist can see how Micah's o2 levels go up and down all night long with out o2...i'm hoping they can get the results they need for this test! They will also be checking his co2 levels and so many other things that i have no idea. This test is painless...thank goodness...but he doesn't enjoy having all the leads stuck all over his head and body...i don't think i blame him! He ends up looking like a head trauma patient because they have to wrap his head with gauze to keep him from pulling the leads off...kinda funny and very cute!

We are still waiting for the Child Development Center to call us to tell us when we will be doing the swallow study and am waiting to hear back about the Phox2B gene test for CCHS. I am hoping by the end of the month we know the answer to this and if we will be heading to Chicago to meet with the dr's at Rush or not.

Oh and to top all of this off...we are moving in a little over a month and a 1/2. I think we our move in date is set for July 23rd in Rochester MN...and I haven't even began packing, although Seth and I did tackle part of the basement one night this week and threw out a bunch of stuff and packed up some stuff to give to the resell it shop here at the Seminary!! It's amazing the amount of junk we accumulate!

We are off to Iowa for the weekend. My younger sister is having a baby shower. She is due with a little boy (Isiah Thomas) at the end of the month!
Blessings
The Flicks!!!

No updates just pictures

I don't have any new updates...just some pictures for you to enjoy until we get some updates on where we stand with everything with Micah...ENJOY!

Fun a the park

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!!!!
Blessings

Melinda

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!

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!

Blessings

Melinda

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...

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!!!!!!!!!!!!!!!!!!!!

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.

Blessings

Melinda

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.

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!!!

Neuroblastoma

The results of Micah's mass pathology is back. He has neuroblastoma. He will be having a bone scan and bone aspiration sometime nextg week to see if it is in his bones at all...we are praying it's not and that the only cancer he has was the one they removed.

Praise the Lord

SOrry it has taken me so long to update. THe last fews days have been crazy!!!!

First Micah is doing great!!!!!!
Surgery went really well...it was hard on Seth and I to let them take Micah for surgery but we made it through. (thank goodness....thank you Lord for the strength). The surgery took about an hour but the prep work in the OR took about an hour so we were without him for about 2 hours.
The surgeon got the whole mass!!!! It ended up being the size of a golf ball. If you remember only 2 1/2 weeks ago it was only the size of a pencil erase, then last Thursday the MRI showed it to be about 1 inch and then when they removed it on Monday it was a golf ball size....it had grown ALOT in two weeks. (Praise the Lord for safe removal of the whole mass!).
The surgeon told us that the preliminary results of the mass show neuroblastoma but that the confirmed results we will find out hopefully later today or tomorrow!!
Micah did so well during and after surgery that they let us go home yesterday. Yes only 24 hours after surgery. He is a trooper!!!
One bummer thing though....Micah's left eye is now droopy and the pupils are not the same size anymore...the dr said he might of stretched or temporarly damaged a nerve when the was removing the mass and Micah has now developed "Horners syndrome" ( think this is the name). It should go away in a few weeks...we hope!!!
Thank you all for prayers!!
Micah is getting fussy so i gotta go but will update more later!!! God is good!!!

Tomorrow

So tomorrow is the day. The day where the mass will be cut out of Micah. I am starting to get very nervous about it. I don't want Micah to have surgery. I just want him to be healthy and happy, mass free, but I want the mass to just disappear on it's own. This just doesn't seem fair that Micah has to go through this. Grrr...yes that is me getting angry. I'm beginning to feel it build up and seap out a little bit, or maybe it's been building for a little while and I am just now starting to let it out a little bit.
I know God is with Micah. I know that God has a plan. I know that God will take care of our little man. I am just fearful of what can happen with the surgery.
We just sent Noah to Phil and Donna's house (Noah's Godparents) for the night and day tomorrow so that we don't have to worry about him tomorrow. Having him leave was heartbreaking. I've been away from him before (when Micah was born and when Micah was in the hospital for two weeks) but this time it was just harder. I love my boys and hate to have them away from me.
So anyway, I guess I just ask for prayers right now. Pray that Micah is well taken care of and that Noah has ALOT of fun with his Godparents (I know he will...he LOVES them to pieces).
I will try to update tomorrow as the surgery goes and after.
Blessings

Melinda

Monday

Micah will be having surgery on Monday at 12:10pm (well that's the time it is scheduled for). We are to be at the hospital at 10:45am. I am starting to get nervous. I am not excited at all about my baby having to have surgery. I am not excited that he will be in pain, i am not excited about any of this, actually I am crushed. I am heartbroken knowing that my baby will be in pain. But I know that God is with us. He is taking care of us. He has a plan! I pray that He guides the surgeons hands. I pray that HE keeps my baby safe. I pray that everything works out the way it suppsoed it and that Micah does wonderfully and that in a year or two we look back at this and just remember it as a nightmare that we went through instead of one we are living in.

Surgery

Surgery for Micah will be on Monday sometime. Don't know much more, just got the phone call. Kinda freaking out a little bit. Very very nervous. Please please pray for little Micah. Will update as we know more.

Quick Update

Don't have much time to post as I need to be getting ready for the vicarage assignment service. Yeah!! Anyway...

Met with the oncologist Dr. H. (he's awesome) He says that the mass/tumor is what is called a para spinal mass most likely neuroblastoma and might be touching the spine/backbone. We will find out more tomorrow after the MRI. The dr said that the mass is behind the lungs and heart (i think this is what he told me). Surgery will most likely be the end of next week or the beginning of the following. After surgery we will find out what he has for sure and what is the next step. As long as they can fully get the mass out then most likely he won't need anymore treatments, if they can't then we will go from there and hopefully have to do the least treatment possible. Don't really have much more to say, hope to get he results of the MRI tomorrow or at the very latest Friday. Will update more when I get more..or maybe tonight to let you all know where we will be moving to this coming summer!!!! WhooHooo!!

Blessings

Melinda

Tomorrow is a busy day

Tomorrow is a busy busy day for us here in the Flick house. The day will start by taking Micah to see the chief of oncology at Children's Hospital. We haven't met this guy yet but have been told he's very good. I'm not exactly sure what he's going to tell us that we haven't already heard but I figure if we are moving Micah to Children's we should probably get to know everyone who will be treating him. I thought it would be better to meet with this guy after the MRI but I guess we will be seeing him before. Maybe he will have more information for us about where we are going from here. (the MRI is on Thursday afternoon)
After the appoitment and dropping Seth off at the Sem. I will be heading home to get ready for the Vicarage Assiment service! Yeah!!! We have lived here for 5 years and will finally be going on vicarage, we will finally get to go to this service and be one of the families who's name is called out and told where we will be going in a few short months! The service starts at 3pm.
Ok so maybe it's not as busy of a day as I might of thought, but it's still a very busy and exciting day for us!
We are praying for good news at the Oncologist office and are praying for great news after the MRI. Wouldn't it be great if the doctors all came back to us after the MRI and said they must be mistaken, that there is no mass. That would be awesome. I know God does work miricles, so there is always the possiblity of this happening, but i'm not getting my hopes up for this. Now I don't expect them to find anything else, but then again it's not beyond the rehlem of possiblity as we didn't expect to hear that Micah has a mass in/on his lung (can't wait until that is cleared up...the in or on part, well okay all if it but for sure that) a few weeks ago. I don't know that any parent ever expects to get a phone call where the doctor starts off by saying "I have bad news for you". I kinda think that doctors should be banned from starting off a converstation that way. Your whole world just kinda drops all of a sudden, the world stops moving and all you can think of is the worst possible scenerio. "oh my gosh i'm going to lose my baby". Now the situation isn't that grave (at least as far as we know, please pray that it's not), Micah still has a long road ahead of him, an uphill battle, a scary journey, one that I never ever wanted to have to take. You know when you get the bad news you just want it to be a nightmare, you just want to switch places with your child, you want to be the sick one, the one who has to go through test after test, unfortunately this is not the way it works, but man I would do ANYTHING to make Micah well.

Not much new

Other than I took Noah for his 18 month well baby visit and he is now 36lbs and 36 inches tall...yes at 18 1/2 months. He is HUGE!!!! He is doing wonderfully though! The dr said all looks great with him which is amazing to hear after all the crazy stuff going on with Micah!

Blessings

Melinda

A BEAUTIFUL day

It was gorgeous here today. Sunny, warm, and just plain wonderful. Noah, Micah, Grandma Flick, and I all played outside. It was a great help in raising my mood. Praise the Lord for beautiful weather.

I heard from the hospital and Micah has his Chest MRI on Thursday at 2:30pm. I am not looking forward to this as he will have to be sedated again which most likely means he will not be able to eat for 8 hours before the test....you tell me how I am supposed to deal with a hungry baby all day long. I am stressed out about it already and feel horrible knowing that I won't be able to feed my 5 month old who doesn't understand any of what is going on and why he can't eat or why he keeps getting poked at and messed with. He is such an amazing little guy, a fighter and is coming through all of this very very well but it still kills me to see him in pain when they run test, to see him crying and not be able to comfort him. I love my little guys so much and I feel like I am living in a nightmare right now. I just keep praying that he doesn't have "neuroblastoma". I keep praying and hoping that the mass in or on his lung (still unsure which one it is...who do i believe?) will be benign, or that when we go get his MRI on Thursday they will not find it. I keep praying that it will disappear on it's own and that Micah won't have to have major surgery to remove it. I want someone to tell me that they are 100% certain that Micah is going to be okay. I never thought I would ever have to take a child of mine to the hospital to see an oncologist. Cancer is what happens to other people, not to us, not to Micah. But it looks like it is happening to us, to Micah. I am continuing to try to hold on hope that that isn't what this is, but it's hard as all of the dr's that have seen him so far are saying yes to neuroblastoma or NB for short.

I really just want things to go back to "normal", to the life we had before Micah got sick with RSV. I know it's a blessing that this has been found so early but it still really blows.

I am tired
I am sad
I am confused
I am worn out
I am in crisis mode
I am running on God's grace and comfort
I am thankful for family and friends
I am ready for good news

Psalm 60:12

"With God we will gain the Victory."

Next week

Next week is going to be a busy but somewhat exciting week for us. On Monday I get to take Noah to his 18 month well baby visit!!!! I am excited to see what the dr has to say about my "BIG" boy. Who by the way is FINALLY walking more than 95% of the time!!! WhooHooo!!! He is so stinking cute and while he doesn't "talk" he does babble and say "yeah" all the time and point to everything! Tonight I asked him where Micah was and he pointed right to him. I've also found Noah laying his head next to Micah's and holding his hand. They love each other already!!!! Noah is already a great big brother!!
On Wednesday morning Micah is going to meet the Chief of Oncology at Children's. We are hoping to find out more answers and opinions to what the next step is with this little guy whom we love so much! Sometime next week Micah will be having a Chest MRI at Children's as well. I'm still not sure if we are going with Children's or St. John's but it's looking more like Children's. We will see though how things go next week.
But the EXCITING part of next week comes at 3pm on Wednesday. We will FINALLY find out where we will be moving to this summer. Seth will be doing his vicarage finally (after 5 years of living here) and we are looking forward to a change in scenery but a little bit nervous to be leaving with all of this going on with Micah.
Good news is that Micah took a nap this morning without his o2 on and his o2 stats stayed between 97-100% (NORMAL RANGE!!!). Usually when he is without the o2 and sleeping he drops into the 65% area and then goes up and down up and down....but not today....maybe this is the start of him getting better at least in one area!!!!
Thank you for the prayers!! Please keep them coming as we still have a long road ahead of us.

Blessings

Melinda

Words that encourage me during this time

Psalm 91:14-16

"Because you love me, I will rescue you.
I will protect you because you know my name.
When you call to me, I will answer you.
I will be with you when you are in trouble.
I will save you and honor you.
I will satisfy you with a long life.
I will show you how I will save you."

What we know as of right now....

not much. That's right we finally talked with Dr. Bob last night about 45 minutes after he said he'd call. I don't feel like we got very far though. Here is what he said. Micah needs to have this mass removed and he needs to have it done within the next two weeks (ok so I already knew this part), he needed/wanted to talk to a few more people about what they thought about the mass, removing it, and Micah's breathing issues. Some people/dr's are saying that it's not a good risk to take and some are saying it is. What we know is if they don't remove the mass it could continue to grow and block off air flow, it could spread, or it could shrink. Since we have no idea what it is going to do it is best to remove it. Dr. Bob was supposed to get back to us today about what the surgeons said but of course he never called so I am still waiting. (oh this is the story of my life!!!! waiting waiting waiting!)

Today we met with Dr. H at Children's hospital. He is a surgeon there. We wanted a second opinion and we felt like this would be a good place to start. Well i am more confused now than I was going into the meeting. Dr. H looked at Micah's CT scans and said that the mass is on the "outside" of the lung while Dr. Bob (Micah's oncologist) said it is on the inside of the lung. Dr. Bob says the mass needs to be removed in the next two weeks, Dr. H said he didn't think it was that urgent to remove it so quickly but it should be removed. Dr. H was going to call all of Micah's Dr.'s (let's see there is Dr. S, Dr.I, Dr.B and a few others), he was going to call me back today if he could get ahold of them all but I guess he didn't get ahold of them because I never heard back from him. He was also going to have the radiologist at Children's look at the CT scan to see what they had to say. Dr. H is also pointing his finger at neuroblastoma as the culprit of this mass. Dr. H also feels as though the mass isn't what is causing Micah to have the breathing issues while sleeping so we have gotten no where with this.

How am I feeling? CONFUSED and FRUSTRATED!!!!!!!!! I just want the dr's to all say the same thing, I want them to work together and come back to me and let me know what we are to do next. I want my little boy to be healthy. I am tired of waiting, I am tired of dr's not calling me back when they say they will. I am ready for this nightmare to be over.

Hopefully I will have more to update tomorrow. Again if you've called me and I haven't called back I apologize. I hope to get to everyone as soon as possible.

Thank you so much for all your prayers!! Please keep them coming we need as many as possible, we would LOVE a miracle, and i know our God does them, we are praying for one!!!!

Blessings

Melinda

Beyond Annoyed

I am beyond annoyed right now. Dr. Bob was supposed to call us at 8pm to talk about the next step in this whole ordeal, it is now 8:30 and no call. Seriously if you say you are going to call then call. It's rude and frustrating to say one thing and then not do it. Now I understand that Dr's are busy but Micah is his patient and we need answers. I'm so thankful that we have a second opinion scheduled for tomorrow (April 15th) at 12:45 with a pediatric cardiac thorasthic surgeon at Children's Hospital. The more we are getting jerk around where we are the more I am leaning towards just switching everything to children's.

A few things we did find out today during Seth's brief converstation with Dr.Bob. 1.) Micah has no other signs of masses anywhere in his body!!! 2.) There is a very small chance that they can do a less invasive type of surgery to remove the mass, the Dr. wasn't very confident that this would work though due to the size of the mass (and it's really not that big to start off with). 3.) Micah will be having surgery within the next two weeks. 4.) The stay at the hospital will be at least 5 days, could be more depending on how he does and how his breathing goes. 5.) Dr. Bob was going to try to talk to a few other dr's to see if they felt that it was safe to go ahead with the surgery even though he has breathing issues, if they don't feel it is safe it sounds like we will "wait and see" what the mass does...this is not really the best idea because they can grow and spread. I think that's all I have for now.

I'm sorry some of you have been calling and haven't gotten through to me, i apologize, but right now i'm working in crisis mode, trying to keep my phone open for dr's to call and to be able to call other dr's. I promise to get back to you all in good time.

Praise God!!!

Praise God!!!! We just heard back (after much nagging and frustration) that there are no other masses in Micah's little body. The only one is the one in his left lung!!!! God is good!!!!

Where do we go from here you might ask. Answer: I have no idea. The oncologist is calling back later to talk us through everything to let us know what the plan of action is. Also...we have an appointment at Children's Hospital tomorrow to get a second opinion from a Cardiac Thorastic (i have no idea how to spell that) Surgeon to see what he says. The way things are going right now I feel like switching to them...but we will see. I'll update as soon as we talk to Dr. Bob to see what he wants to do!

Again...prayers of Thanks for no other masses!!!!!!

God is Good!!!!!!!!

Blessings

Melinda

Why?

Many people have asked us how we are doing, how we are feeling through all of this and for the most part I'm able to stop and say we are hanging in there. To be honest thought this down right sucks. I don't understand why Micah has to be going through so freaking much. He is such a sweet wonderful little guy who smiles and laughs constantly. He brightens up any room that he is in. So why is he having to go through all of this? Why my baby? I know that people will say it's because we are sinful and live in a fallen world. I know this but it brings no comfort. It down right sucks that Micah has to endure so many test, be poked and prodded, get things shoved down his nose, be sedated, have so many doctors appointments and not be able to go without oxygen while sleeping. He didn't ask for any of this, and while he was born sinful he has been born again, his sins have been washed clean. I sit and watch my little man sleep and he looks so peaceful, I look at him and he looks so healthy yet has this foreign mass growing in his body. You know I don't even care how this affects me, how much I have to run around, what I have to do. I just want Micah happy and healthy. I will do anything needed to be done to just help him get better. I am so mad, so frustrated, so confused, so sad. But...I am still holding on, praying that there are no other masses. Praying that all that has to be done is surgery to take out the mass. Praying that Micah will recover and continue to grow and become a wonderful great little boy and then grow up to be an amazing young man. And you know not only does it make me angry that Micah is being hurt by all of this but Noah hasn't had it easy either. Noah doesn't understand what is going on, he doesn't understand why mommy and daddy have to go run around all over and leave him with babysitters. He doesn't understand why Micah has wires and tubes coming off of him. He doesn't understand any of this, all he knows is that his world is getting turned upside down as well.
But through this all I continue to keep my faith. I know God is with us. I know God is listening to all of our prayers. I know that Micah is in the best hands possible...God's. I know that God loves us very much and loves baby Micah more than I could ever even possibly describe. God is here with us, He will never leave us. This gives me comfort. While I may not understand why this is happening I do know that we are not alone.

Blessings

Melinda

No news is good news?

Hey everyone...well Micah had his CT scan today. It went well. They had a really hard getting the IV in and had to poke him quite a few times. Poor little guy, at least he was already knocked out for that. He also had to have a wonderful (not really) NG tube placed so they could give him the contrast for the test. He did okay with this, didn't like it but it made him feel like he was "full" which was a good thing since he wasn't able to eat anything since midnight.

As for right now we have no idea what the scans said. We haven't heard back from Dr.Bob (Micah's oncologist) yet. Seth called twice and they didn't have the test from the radiologist at that time and I just tried to call and the office is closed. So i'm thinking we are waiting till tomorrow to find out which is really frustrating but i'm hoping that no news means good news. Right now we are praying for no more masses. As for where we go from here....we have no idea. Surgery next week? Possibly. We did get the DVD of the scans so we can get a second opinion from Children's Hospital and Seth and I looked at them but it's like a foregin language to us and we have no idea what we are looking at.

Thank you all for your prayers and constant thoughts and words of encouragment. I promise to update as soon as I get the results.

Again please contiune to pray for no more masses!!!!!!

Blessings
Seth Melinda Noah and Micah!!!

Our Noisy Micah

Prayers of Thanks

Two things for now:

One: I got a call from the Oncologist office this morning...all of Micah's blood work has come back great....nothing in them to be concerning!!! Yeah!!!!

Two: Micah is scheduled for his second CT scan on Monday the 13th. He will have a head CT and his kidneys CT'd. He again will have to undergo some minor anesthesia but hopefully we will find out more from these scans. We are praying there are no other masses in his little body! We have to be at the hospital by 8:15am and the test is at 11:15am...will update more about the CT come Monday (or whenever we get the results).

Please give up a prayer of Thanks for the blood work being good and a prayer that God will watch over Micah again during his CT scan and that there are no more masses!!!!!!

Blessings

Melinda

Micah

As many of you already know alot has been going on with Micah for the past month and a half. For those of you who don't know the story I'll go ahead a post a short little tid bit of our journey up to today.

In February Micah got sick, we ended up taking him to the ER on February 20Th and he was diagnosed with RSV and bilateral pneumonia. Micah was admitted that same night. The dr. told us to not expect to go home until Monday (this was Friday night). While spending a few nights in the hospital is not really what we would consider "fun" we were okay with a few days. Well Monday came and went and Micah was still sick. Micah was getting over the RSV and pneumonia but was unable to keep his o2 stats up while sleeping. From what we were told a "healthy" person stays at 95% or higher someone who is sick can go into the low 90's but Micah continued to drop into the 60's, 70's, 80's and would jump into the 90's. We were told that in order to be discharged Micah had to be able to go all night without needing o2. This did not happen. We ended up being discharged 2 weeks from the day we were admitted. But along with going home we had to bring home o2 and a monitor for Micah to be on. The dr's were just hoping that it was the residual RSV that was causing him to drop his o2 while sleeping.

While at the hospital we also found out a few other things while they were trying to figure out why Micah was still dropping his o2 stats. He has silent reflux with aspirations, he also aspirates when he drinks his bottles. In order to fix these couple of things Micah is now on prevacid 2 times a day and sleeps at a 45 degree angle in his crib in a "tucker sling". We also thicken his formula with a product called "simply thick" to keep him from aspirating when swallowing.

After a few weeks the dr (who by the way is wonderful) decided it was time to move on to some other test. Micah was scheduled for a CT chest scan for this morning. These are pretty routine and we went into it thinking that they honestly wouldn't find anything and we'd still be clueless to why Micah continues to destat. Unfortunately this was not the case. The CT went great we were done and discharged by 9am and we came home. Around 1pm we received a phone call from Micah's pulmonologist. He told us that he had bad news. Micah has a mass in his chest and it looks like cancer. Yes the dreaded C word was dropped.

So we met with the oncologist today at 3pm. The oncologist is having another CT done on Monday (hopefully) they want to scan his brain and his kidneys to see if there are any other masses. He also wants to remove the mass in about two weeks.

Really this is all we know right now. I hope to find out more soon but am not sure when this is going to happen. I apologize for the quality of this post, I am exhausted and have had a long day. All we ask is for your prayers. We know that God is with us through this all. We have faith that the Lord is watching over Micah and that the dr's will "hopefully" figure out what is going on. I hope to continue to post when we get more news.

As for Seth and I. We are doing alright. Emotionally and physically exhausted but able to keep moving forward. We both are in crisis mode right now just trying to get things done and figure out what the next step is. Noah is doing wonderfully as well. Getting big and walking finally!!!!!

Blessings

Melinda, Seth, Noah, and Micah!

The boys are getting big!

Just wanted to quickly update for who ever reads this, if anyone. The boys just had their well visit appoitments today at the doctors office. Here are the stats! Micah is now 13lbs 2oz and 24inches long. That's 75% for weight and 85% for height, his head is only in the 45% though. Noah on the other hand is 37lbs and 36inches...he is off the charts for everything. The doctor said that Noah is the average height of a 27 month old and the average weight of a 3 or 4 year old. Yes he is one BIG boy.
Noah isn't walking yet but we are hoping he starts that soon. He says a couple of words like will tell you what an owl and a pig say! It's pretty cute!
Micah is smiling and cooing away. He's getting bigger and changing every day!
We are truly blessed to have such amazing boys!!!
Gotta run though, Micah is starting to get mad (darn those hiccups) and Noah is waking up from his nap!
God Bless
Melinda