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

Please Pray for Nathan and His Family

Haven't gotten much sleep. I'm sick to my stomach about what my sister-in-law, brother-in-law, and their 5 year old son are going through right now. It brings back so many memories of the terrible news we got a little over 3 years ago, even though it is a different diagnosis. Except we didn't have 2 other children to tell the horrible news to, a 4 and 12 year old. Praying for Steph, Greg, Tyler, Lincoln, and Nathan as today is going to be a very tough day for their family. Please take a moment and lift them up in prayer and ask that God give them the strength to get through today and the days to come.

Thank you,

M

600 Hours on the Vest / Updates on Everyone

Well, he hit 600 hours on his Vest the other day. What a 3 year old life to have to be tied down for 600 hours of his life already!! I can't imagine what it's like to be him. He is truly my hero for all that he does at his age!!

Here are some pics of the kids having fun talking to each other through the tubes of the Vest:).....

Lil' Chris is feeling much better and is eating better thankfully!! His cough is still there, but getting better. My cold is practically all gone, but Ayla's nose is still running! Not sure why, b/c it's been over a week now! Maybe she has allergy's or something. I'm keeping my eye on her though. The other day I think she caught the lil' bug that Lil' Chris had. She still doesn't seem herself and wants to be held a lot. It makes me nervous with everything that my nephew is going through right now. Please say a prayer for my nephew Nathan. He was admitted to Children's Hospital yesterday for further testing. He and his whole family really need all your prayers.

Thanks,
M
PS. My ankle is still bothering me and I still can't walk 100% yet unfortunately. It's been over a week now and it is still swollen and black and blue, oh yeah...and green;) Pretty soon it will be all the colors of the rainbow:) LOL!

3rd Antibiotic in Only 5 Months / Sprain Update

Guess what??? Lil' Chris is on ANOTHER antibiotic!! Apparently he can't go more than one month w/o an antibiotic anymore. He was on Augmentin in March, then Bactrim in May, and now Augmentin again. I've read about this happening to Lil' Chris' CF buddies, and now it is happening to him;( I can't help but see his future getting worse and worse as we knew it always would, but not this soon;( All we can do is just continue to pray for him and all CFers!! WE NEED THAT CURE NOW, NOT LATER, ok...we need it later too, but I would really prefer to have it now for MY child and CF friends;)!!!

Lil' Chris is doing better besides his bad cough now. He isn't asking to go to sleep all the time anymore and his nose isn't as stuffy as it was, so that's good. He still wants to sit with me all the time and watch TV...that may just be sympathy for my ankle though;) Too cute. This morning he kissed me foot to try to make it "all better", I LOVE this kid:)

My ankle is doing better. It is still all swollen and is now bruising all over, but I can at least walk on it a lot better than the first few days:) It's so embarrassing limping at work, but a girls gotta do what a girls gotta do for her family;) lol This pic actually looks A LOT better than before, the swelling has gone down quit a bit, but is still swollen!! You can see the bruising along the bottom...

Special thanks to our babysitter, Vicki, for coming at the last minute last Wed night at 10pm so that I could go to the ER! Thanks Vicki!!

The kids were really good while I was out of commission and Daddy was working. They just sat and watched TV...(well, most of the time;) Ayla has now mastered climbing up on the couch and getting down safely, so now that is all she wants to do;) lol

Lil' Chris even let me practice putting the ace bandage on his ankle;) When I was little girl, my Daddy taught me how to do "the braid", so I taught it to Lil' Chris;) Thanks Dad!! Who knew that would come in handy??? LOL =)

I forgot to tell you that I got Lil' Chris' throat culture back and he cultured Staphylococcus areus sensitive to Oxycillin(MSSA). This is a bacteria that he has grown before, so we were told to keep doing what we are doing and not to worry about it. It's hard not to worry about it when there is nothing I can do to make it go away! All I can do is pray that his next culture will be normal....normal....we haven't seen that in awhile;( His new CF dr wants to see him after the Augmentin in done, so hopefully he will culture normal then. He has to take this Augmentin for 14 days at 3ml 2 times a day. This is the first time that he has taken Augmentin for only 14 days. His old CF dr always made him do it for 21 days, so I guess only time will tell. I'm just glad that he likes the taste of it;) lol

My hubby's cold seems to be all gone, but Ayla and my nose are still running a little bit. We probably keep passing it back and forth to each other;)

I'll keep you updated,
M

Sprain and CF Update

Well, today has been interesting!! My husband had to go to work today, so I was left alone to take care of my sprained ankle and our 2 wonderful lil' kiddos. Lil' Chris has been a big help by getting things for me when I ask him to...what a lil' sweetie pie:) Ayla has been good too by listening to me when I tell her "no, get down" or "no, don't touch". The hard part has been getting up to feed them or change them or put them down for naps and get them up or when Lil' Chris asks for something as soon as I sit down on the couch. I'm managing though and keep testing out my foot by putting more and more pressure on it. I definitely can't walk on it normally yet, which scares me b/c I HAVE to work tomorrow. I'm the only working that knows how to close down all 14 registers! I may have to use the store's wheelchair...LOL!! How embarrassing that would be!! It's a lot less embarrassing than if I were to bring in my Granny walker!! LOL!! I gotta say, that thing has come in handy though;) Thanks Honey!!

Poor Lil' Chris, he still has not been acting like himself today. He didn't throw up anymore yesterday, but he still didn't eat anything and kept acting tired. He is doing the same thing today, but he keeps complaining of a tummy ache. He is down for a nap right now, but all I keep hearing is him coughing. Poor thing. I guess it's time to call the CF clinic for another antibiotic. It feels like he just got done taking an antibiotic!!

I think Lil' Chris did catch our colds. I have noticed that the last couple of colds he has had have been kinda like this. I guess his mucus is getting thicker or something as he is getting older, b/c his nose doesn't run like a faucet like most people's do the first couple of days of a cold. His gets all stuffy and seems to run down the back of his throat. Poor guy;( It always seems to end with a cough too! Does any other CF mom's kids or adult CFers get like this too??? Please let me know.

M

PS. How do you like the new Header Pic??

Sprained Ankle / CF Update

Last night we got back from our vacation to go see all of our family and friends and for an awesome 4th of July party! Thanks Nancy and Al, we had so much fun on the 4th!!! I'm still uploading pics from our trip, so I will post them soon. For now, I will update you on what has unfortunately happened since we got home last night...

I was watching the kids play outside while my hubby was unloading the truck...he says I pack enough for a whole month instead of a week;) LOL So when he got done, I started to bring the kids inside because it was getting late. We went in through the garage like we usually do, and I stepped onto the first step(there are only 3 steps) and tried to lift Ayla into the house, but our door doesn't stay open and it was flinging back, so in order for it not to hit her, I stepped up on the second step to catch the door with my elbow and then I lifted her under her arms into the house. Then I went to turn around to get Lil' Chris and that's when I guess I forgot that I went up that extra step to catch the door and therefore I practically missed the last step. My left foot was turned sideways and caught the edge of the bottom step and then rolled and, well......I rolled with it;) LOL

I looked down in pain and saw that it was already swelling up. I didn't want to go to the ER, but my hubby convinced me and when our sitter got here, we went. Luckily it went pretty quick! We got there at around 10pm and were home before 11:30pm! I'm starting to get a little too acquainted with our ER. First, my miscarriage, then when my hubby popped his shoulder out, then my lil' nephew with an asthma attack, and now this!! That's a lot in just 4 years!!

Anyways, they took me right away, and then I got x-rays really quick, and then went to my room to wait for the dr. He said that it wasn't broken, but it was a sprain. He gave me an aircast to wear until I don't feel pain anymore . He said that I should be okay to go to work on Saturday, but I haven't been able to put any pressure on it yet, so hopefully tomorrow it will get much better. It is already bruising all over. Hmmmmm I wonder what shoes I'm going to wear to work;0 LOL The pic below is my aircast. Don't you just love the sock they gave me??? LOL It has non-stick treads on BOTH sides!!! Special;-) LOL

I have to say, Lil' Chris has been very good about supporting his Momma;) He saw the whole thing happen and started crying saying "Mommy?? Mommy??" It was so cute that he was worried about me. When my hubby helped me to the couch, he came over and told me that he would blow on it. I said "Ummmm okay???" with a puzzled look on my face. Then he went over to my propped up foot and started blowing on it to make it feel better;) Too cute! Not sure why that would make it feel better, but it's the thought that counts;) Before I decided to go to the ER, I tried to stand on it and when I stood up, Lil' Chris thought that I was standing on both feet and started jumping up and down saying "Mommy's foot is all better!! YEA!!" It was so cute, I hated to disappoint him;(

As for now, I'm am staying off my feet since my hubby is home today. Tomorrow I will have to take care of the kiddos all day, so that will be interesting. I'll let you know how it goes over the next couple of days.

As for a CF Update, this morning when Lil' Chris woke up, he was not himself. He was acting really weird and tired still. The tiredness is understandable since he didn't really get any naps all week while we were on vacation. He wouldn't eat anything and spit up a little bit and kept asking to go back to bed, so he did and fell back asleep for a while. Then he woke up and threw up and then went back to bed AGAIN! He didn't really get up until about 3pm. We did his Vest even though we were worried he might throw up again, because throughout the night and this morning he has been coughing a lot. We think it might be because we had a fan on in his room b/c it was hot in here. Does anybody else have that problem with their CF kid?? He hasn't thrown up again yet, but he still is not acting himself or eating, and he keeps asking to go back to bed, but hasn't gone back to sleep again yet though. I think he might be catching my cold. Ayla and my hubby already did;(

I'll keep you posted. Please pray for all of us to heal quickly.
M
PS. My hubby bought me a $10 Granny walker, I guess he got tired of giving me a piggyback ride to and from the bathroom;) LOL At least now nobody has to buy me a walker or cane on my 50th birthday!! =) LOL The kids are enjoying playing on it:)