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