Update / Montage of Summer Pics;)

Sorry it's been so long since I've updated. Any spare time we've had lately, we've been searching for a new car for me. We are taking advantage of test driving different vehicles with a third row seat while Oma is still here. It's too hard to try to test drive cars with 2 kids, b/c of the car seats and you know....them screaming;) LOL Anybody have any suggestions for an all wheel drive SUV with a third row seat, or a nice all wheel drive van(I'm trying to stay away from a van, but they are kinda convenient with 2 kids...we'll see;)

Can you all please say a pray for my nephew Nathan? He was running a fever today so they had to take him to the hospital! There is no obvious signs of infection, probably just a virus, but he is staying overnight to be monitored. Please pray he gets better soon so he can go home to his 2 brothers. He has been a champ lately with all the chemo and everything. I'm so proud of him!!

Lil' Chris has been doing well. He and Ayla have been having fun playing with Oma:) Thanks Oma for babysitting, doing wash, dishes, and cooking!! You ROCK!!

Here is a montage of some random pics of the kids this Summer. The first video is of Ayla coughing every time I told her to fold her hands to pray before dinner:) It was so funny!! She must have done it a million times, b/c we kept saying "fold your hands" and we could not stop laughing:) LOL

Make an on-line slide show at www.OneTrueMedia.com

Please also say a prayer for Lil' Chris' CF buddies Phoenix and Sophie. They need to get some answers soon. I HATE what CF does to these lil' bodies!!!!! Click on their names for their blogs.

Thanks for checking in,

M

PS. My next post will be about not one, but TWO blog awards I got recently;) YEA!!! Thanks girls:)

Update / Montage / New Header Pic

I LOVE this pic of Chris and the kids!! I just had to make it the new header pic:) It was when we stopped to look at the big lighthouse in Marblehead(those pics coming soon;)

Photo and video editing at www.OneTrueMedia.com

Here is a montage of pics and video's that I had on my cell phone. My new phone is a 5.0 mega pixels, so they didn't turn out too bad(way better than my last phone;) lol

The first few pics are of our trip to Great Wolf Lodge Indoor Water Park. Unfortunately I didn't get any pics of the water park on my phone, so those will be coming soon;) The rest of the montage are just random pics and video's from this Summer:) There are pics of Ayla climbing up to my laptop and pretending she was Mommy;) (BTW...she came down the stairs yesterday all by herself!! On her butt of course, but it was a big moment for us;-) Then video's of Lil' Chris singing, jumping, and dancing slow and fast;-) I like the one of Ayla wiggling and playing the drums;-) lol Enjoy!!

I haven't had time to edit the birthday pics....it's like 20 minutes long and I just don't have time anymore. I may just post it "as is" LOL!

As for an update...Lil' Chris' cough seems to be gone. He coughed a little when we were at the water park, but since we have been home he hasn't been coughing much...Thank God!! Ayla is getting so big and talking more and more. Her fav words are...NO & MINE!! I guess that comes with the territory when you have an older brother;) LOL Oh yeah...and MORE, b/c she is always hungry:) lol Although, she doesn't eat as much as she used to, but still way more than her brother that's for sure! I WISH he would eat more than just hot dogs and french fries!!! He is so stubborn, he won't even TRY new things!! Drives me nuts, b/c I know his body needs extra calories and stuff!! Sigh;(

My ankle is still the same pretty much. It's still swollen around the ankle bone and still hurts when I move it certain ways. It's been over 5 weeks!! I'm just glad I can walk mostly normal;) It just mainly hurts when I walk in the morning when I get out of bed. I'll give it another few weeks. I'm praying it heals 100% soon!!

I have a request...please pray for some of Lil' Chris' CF buddies, they need your prayers. Skye and Ben. Click their names to see their blogs.

More pics to come...maybe while Oma and Opa are here this weekend I can steal away and try to get some more pics posted for you all;-)

Thanks,
M
PS. HAPPY ANNIVERSARY TO MY WONDERFUL HUBBY!!! 7 years married and 13 years from our first date;-) I LOVE YOU HONEY!! Thanks for a great weekend at Great Wolf Lodge!!

Update on Everyone and CF Question

Lil' Chris' antibiotic ended on Monday and he STILL has a lil' cough! He doesn't cough all the time, just once in a while or when he is crying. Problem is...it should be gone or at least not still junky sounding. I knew I should have asked for the usual 21 days instead of 14 days of the Augmentin!! Lesson learned...bad part, is that his LUNGS are the ones suffering;( I was debating all week whether to call the clinic or not, but I wasn't sure b/c like I said...it's only once in awhile. Well, today I took Ayla to the pediatrician and I had to take Lil' Chris with me unfortunately(we try to keep him out of the dr.'s office as much as possible, but my hubby had to work and the sitter was busy). Anyways, their dr. heard him cough and she thought it was junky sounding too. I felt better when she said that, b/c now I know it's not just me! She suggested to keep an eye on him this weekend and if it's not better by Monday to give the clinic a call. So that is what I'm going to do. Do any other CF mom or dad's out there have any advice?? Has this happened to your child before?? What did you do?? How about any adult CFers??

I got a call today from the Dietitian at the clinic and she suggested to continue doing 1 scandishake a day and also add this new juice. I forget what it is called, but it comes in apple so I'm hoping that he will like it. He HATED the Breeze juices. I'll let you know when we get our order in. BTW, we got approved for BCMH again for another year!!! YEA!!! I don't know what we would do without this secondary insurance for him! It pays for EVERYTHING!! His enzymes alone cost $1 for each pill, and he takes 3 with every meal and snack, so that's like $15 EVERY DAY!! We got approved for "formula" again too....that means his scandishakes and this new juice thing are covered. Thank God for BCMH!!

Ayla's visit went great!! She unfortunately had to get 2 shots in her legs;( She's a fighter though! She ripped the bandaide off as soon as she stood up! lol

My ankle is still the same....wish I had better news. It is still swollen around the ankle bone and I can't move it from side to side. At least I can walk ok with it now:) I've noticed that I can't walk in grass...apparently it's not flat. I never realized how uneven grass was before!! I DEFINITELY can't walk up a hill....found that out the hard way!! LOL

As for Lil' Chris' cousin, Nathan, who was recently diagnosed with Leukemia...he is home and doing well! He had to go get his chemo today and some shots, but is home now and I hear that he is eating my sister-in-law out of house and home:) So glad he is gaining back the weight that he had lost before his diagnosis! The steroids apparently make him hungry and he is loving the Danimals that Lil' Chris loves too:) I wish they lived closer. I know that this is going to give them a special bond as they grow old together....and I KNOW they WILL grow OLD together;-)

Please continue to pray for Nathan and Lil' Chris.

Thanks,

M

Nathan is Coming Home!! / Update on Everyone

Nathan is doing much better and is eating better now aaaaand......He even gets to go home today!!!! Isn't that a miracle?!?! They said his levels look good!

Even though he started his chemo the other day and is getting 2 steroids daily, he still had a big smile on his face when we skyped him the other night. Check out the montage below to see them putting smiles on each other's faces. Lil' Chris had to give Nathan a tour of our living room;-) LOL

Make an on-line slide show at www.OneTrueMedia.com

Nathan had to get a PICC line the other day, you know.... I never thought of one of the other kids in the family having to go through hospital stays, PICC lines, Ports, etc. I knew it was a possibility for Lil' Chris and I am prepared for that thanks to all my great adult CF friends and their videos and explanations, but to have my lil' nephew go thru this is just a shock to us all. For those who don't know what a PICC line looks like, here is a video that my buddy Josh did... (if the link below doesn't work, then click here)....

Nathan's PICC line will be coming out since he is coming home now. He will have to go to the clinic once a week and get pricked for his chemo each time;( I'm so glad I was able to convince my sister-in-law to sign up for CaringBridge to keep us all updated better;) Click here to sign up to get her updates.

Lil' Chris' cough is still there, but it is getting better. He doesn't cough all the time, just once in a while, but it is still a wet cough. We are almost out of his Augmentin, so I'm starting to get a little bit worried that his cough may not be gone by the time he finishes his 14 days. I think we should have done the 21 days like our old CF dr. used to have him do. I guess now I'll know for next time.

As for my ankle, the swelling has gone down quite a bit, but is still swollen on the ankle bone, which is where it hurts the most esp if I turn it the wrong way or step on it wrong. The bruising is looking better too, but is still multiple colors, just lighter now;-) LOL



So on top of limping around and wearing 2 different shoes b/c my ankle is so bruised, I also have a black eye now!! I can only imagine what people must be thinking of me now!! LOL Lil' Chris was sitting next to me on the couch doing his Vest, (and when I say sitting, I mean practically on top of me;)he went to shift positions and somehow the back of his head smacked me right under my eye! Let's just say I saw sparks!!!! It felt like someone had just punched me! Now, this has happened numerous times before, (b/c he is not too careful about flailing his head around your face, esp if he is getting tickled or something;) but this time it REALLY hurt and 2 days later people at work started saying..."Do you have a black eye???" So here it is, this is a pic of me shaking my head about the whole situation....
I'm so glad to have the weekend off. Maybe my ankle and eye will heal all up before I go to work on Monday;) LOL
M
PS. I haven't forgotten about Lil' Chris birthday pics;-) They are coming soon! Please continue to pray for Rachel's family.

R.I.P. Rachel Ebeler

I was going to update you on everyone, but my heart is heavy right now. I woke up this morning to some awful news. A 16 year old girl with CF that I have been following on CaringBridge(a site kinda like a blog) for awhile now, passed away. SHE was the one who would right on her site. She was so sweet and never complained. She always apologized for not updating sooner and always said how much she loved everyones comments.

She will truly be missed;( WE LOVE YOU RACHEL!! I will definitely miss reading your beautiful words!

Please say a prayer for Rachel's family. This came on kinda sudden. She lost an older sister Becki to CF I think, and has a younger brother Brodi who has CF, so I can only imagine what's going through his mind.

http://www.caringbridge.org/visit/rachelebeler/journal

Thanks for your prayers,

M

PS. I'll update tomorrow on Lil' Chris and Nathan.

Our Heros

Well, I think this new header pic says it all...

Lil' Chris and his cousin Nathan truly are

"Our Heros"!!!

Steph's Thank You...

My sister-in-law put this thank you in the comments, so I thought I would post it in case you have been praying too and didn't see it....

"Thank you to everyone who does not even know us! Your prayers are greatly appreciated! Going through this gives us a different insight to how M & C feel. It is devistating enough knowing there is this horrible disease attacking a family members body, but it's a totally different feeling when it is your own. Although diagnosis' are different, the feelings a parent goes through throughout these processes are the same! It's undescribable, but you just know, & I can relate better to the feelings that M & C had & still have. I love you guys very much & we have amazingly strong and super brave boys who are absolute fighters!!!!!!!"

Steph is right. Our boys ARE strong and SUPER brave and they WILL beat the odds!!

Steph and I now have an even closer bond...not one that I would never have wished for though. We have both sat and listened to the dr.'s horrible diagnosis of our kids, we have both cried a river as to why this has happened to OUR family, we have both had to break the horrible news to rest of our families, and we both have realized that our lives will never be the same again.

Steph, I will always be here for you whenever you need me! I wish I could take Nathan's cancer away, just like I wish I could take Lil' Chris' CF away. All we can do is have FAITH together and pray our babies pain goes away forever!

Love You Steph and Nathan!

M

PS. Thank you everyone for all of your prayers, and please continue to pray for Nathan as he started chemo yesterday.

Nathan's Diagnosis

If you have read my last couple of posts, you are probably wondering what my nephew Nathan was diagnosed with this past Thurs. I didn't want to say until my sister-in-law announced it publicly. Today she did. I'll let her tell you in her own words...

"Thank you everyone for your prayers...keep them going, we definetly need them! For those who may not know yet, Nathan was diagnosed with Leukemia (A.L.L is the type). We are looking at 3 years of treatments. A very long road ahead of us. He is brave and strong, I am so proud of him!!!!! I, on the other hand, am not as brave or strong, so yea, your prayers are so needed right now, and through out this long journey!"

Thank you everyone for your prayers, and please continue to pray for them, especially Nathan as he starts his treatments. He will be in the hospital for the next month.

The pic above was taken last week when we were on vacation to go visit them and get a family pic taken. Lil' Chris is in the middle, Nathan is on the right, and Nathan's younger brother Lincoln is on the left. They had so much fun that day posing for the camera..... that is....once the "real" photographer left;-) LOL Shhhhhh....don't tell them we took pics while we were waiting;-) LOL!!

WE LOVE YOU, NATHAN!!! FEEL BETTER SOON!!! WE ARE ALL PRAYING FOR YOU!!!

M