Saturday, February 28, 2009
Hi, I just wanted to post that the 2009 SolvayCARES scholarship program is now open for applications at www.SolvayCARESScholarship.com through May 2009.
This year, 40 SolvayCARES Scholarship recipients will be announced and each one will receive $2,500 for use during the upcoming academic year. To celebrate the 17th year of the SolvayCARES Scholarship, one winner will be awarded $17,000 in place of the standard $2,500 award.
Spread the word out to anyone you know who is eligible to apply!
Friday, February 27, 2009
There were a couple more really cute pics that aren't shown, so I'll probably change the header to one of them later.
PS. Please pray for one of our neighbors. Their 3 year old child passed away in an accident this past Sunday. Their car hit a patch of ice or something and flipped off the road. Everyone was fine and standing outside of the car waiting for the police, when another car hit the same patch and skidded and unfortunately hit the child. He would have been 4 years old today. Please keep them in your prayers tonight as I'm sure today was especially hard for them all.
Thursday, February 26, 2009
I still can't believe that 4 weeks ago today I was in the hospital and looked like this...
And I can't believe 4 weeks ago today Lil' Chris was sitting on his lil' sister like this...
And now I have this beautiful baby girl...Her shirt says "New in Town" :) Too Cute!!
Ayla now looks right at us! She can follow us with her eyes and she will smile when we play with her! She has GREAT head control, has since day one just like her brother;) I am still breastfeeding, but she is not getting much from me unfortunately. So she drinks about 4 oz of formula too with each feeding! I think she will be ready for 5 oz pretty soon;)
We went and got her first photo session done yesterday at Babies R Us! She did a GREAT JOB!! The pics came out sooooo cute!! I'll have to get my husband to scan them in for me so I can share them with you:) Lil' Chris did a great job holding Ayla in the pics. I smell a new header pic coming on;) LOL
Today was the first day that Lil' Chris tried to get Ayla to smile! It was so cute, I wish I had my camera with me:( He got right up close to her and started shaking his head side to side saying, "La, La, La" over and over. I guess he saw me doing it and wanted to try it out;) He is so smart!! Afterwards, he tried picking her up like we do, under her arms. With a little bit of help, he picked her up and just held her cheek to cheek. The cutest thing EVER!! If I wasn't helping him hold her, I would've ran for the camera. I'll get it on camera eventually I'm sure. This is just the beginning;)
I got her smiling in this one...
Well, for those of you who were wondering...I had a great birthday and YES...My husband did stay up with Ayla on my birthday night!! YEA!! A good nights sleep was the best birthday present EVER!!! (Thanks Honey, I LOVE YOU!!) Although the new laptop is a VERY close second and the ice cream cake a close third;) Thanks to everyone who pitched in to get me the new laptop for my birthday!! I was getting pretty hoarse from yelling at my old one all the time;) LOL JK ;)
I owe a BIG thanks to my sister D and her husband for giving me their old laptop last year. It worked great up until recently. I never would have thought that I would have used it as much as I have, maybe I wore it out;) If it wasn't for them, I never would have learned as much as I have about CF and about taking care of Lil' Chris the way he needs to be taken care of. And I never would have met all the nice CF families that have helped me out so much, nor would I have raised so much money for our Great Strides Walk last year to help find a CURE.
I honestly don't know what I would have done if it wasn't for this blog. All I can say is...it keeps me sane;) I look forward to writing in it all the time, and of course checking up on everyone else's blog everyday;) I owe a HUGE thanks to my sister D for starting this blog and then encouraging me to continue it! I probably never would have done it on my own. What can I say...She got me hooked;) I'm soooooo glad she did....THANKS D, YOU'RE THE BEST EVER!!! YOU'RE ALWAYS LOOKING OUT FOR ME AND MY FAMILY...WHETHER IT'S DRIVING 8 HOURS BY YOURSELF TO COME SEE US, OR HELPING US TO FURTHER OUR CAREERS, OR OFFERING YOUR HOME TO US SO WE CAN SAVE SOME MONEY. YOU AND YOUR HUSBAND ARE THE BEST SISTER AND BROTHER-IN-LAW A GIRL COULD EVER ASK FOR:) THANK YOU FOR ALL THAT YOU DO FOR US:) I CAN'T WAIT TO SEE YOU TOMORROW!!!
Tuesday, February 24, 2009
And thanks everyone else for wishing me a Happy Birthday;)
Right now my husband is making me dinner(and don't tell him I said this, but I saw him sneak in an ice cream cake when he came home from work today;) LOL
Isn't he the best! He even said he's going to stay up with Ayla tonight!! Right Honey???? LOL ;)Thanks again,
Monday, February 23, 2009
I'll update you either when I get back or tomorrow.
Here are some pics of the beautiful clay jewelry that Christi (the most talented art teacher;)has made, sold, and is taking orders for...
The prices are:
Remember, it all goes towards a great cause;)
If you would like to buy one or order one with certain colors, please email me at firstname.lastname@example.org
She can make them any size you want, even child sizes;) All proceeds will go towards finding a CURE for Cystic Fibrosis for ALL CFers:)
I know I'll be wearing mine during our Great Strides Walk to show my support...will you????
Saturday, February 21, 2009
Christy at Color Me Healthy had a great idea for all us bloggers to give a quick update on our lil' CFers.
- Lil' Chris was diagnosed with Cystic Fibrosis(CF) at 2 weeks old. He is now almost 21 months old and you would never know he had CF by the looks of him.
- He now has a 3 week old lil' sister who does not have CF and is not even a carrier(Thank God).
- Lil' Chris goes to the CF clinic every 3 months for a check up.
- He hasn't had a bad visit at the clinic yet(Thank You LORD!!!!)
- He gets a cough every now and then and takes an antibiotic for 21 days to get rid of it.
- He has only taken Augmentin, Ceftin, and Sulfatrim for antibiotics.
- He is not, nor ever has been, on any nebs.
- He has not had any sinus problems yet, and hopefully never will.
- His lungs are always clear, but he started the Vest when he was about 11 months old.
- Before he got the Vest, we used to do manual CPT where we would pound on his chest, back, and sides for 2 minutes each, 2 times a day.
- He is on the Vest 2 times a day for 20 minutes each now.
- He takes three Creon 5 enzymes with every meal, and 2 with snacks.
- He takes 2 ML of Vitamax once a day.
- He also takes 1 Prevacid solutab(15mg) once a day to help the enzymes work better.
- When he was a baby, he had acid reflux. That is why he started the Prevacid.
I'm M, his mommy, his daddy is Chris or Big Chris(hence the Lil' Chris;), and his lil sister is Ayla.
We have been very fortunate these past couple of years. He has only gotten 2 colds(and I think the last one wasn't even a cold, I think he was just teething;) We know this good health won't last forever, but we can only hope and pray that it will and he will grow big and strong and live a long healthy, normal life.
I can't think of anything else right now. If anybody has any questions about Lil' Chris, please don't hesitate to ask. I'm going to put his med info on my side bar soon for all to see all the time like Olivia's mom did. I think everyone should do this on their blogs, so we can compare;)
PS. Thanks Christy, this was a great idea:)
Friday, February 20, 2009
For some reason I lost my "blog list" on the right side of the page yesterday...it disappeared somehow???? I tried to put it back today, but this time I split it up into 2 to help me keep track of everyone:) One set is "Fellow CF Mom Bloggers", and the other is "Adult CF Bloggers."
I have a feeling that I am missing some of the blogs that I usually check daily. If you are a fellow CF blogger and you are not on my list, please leave me a comment so I can add you. There are so many that I check, that it is hard for me to remember all the sites. I never thought that I was going to lose my blog list either, otherwise I would have saved them somehow.
I was only able to keep track of the blogs that I have clicked "Follower" on, but not everyone has the "Follower" option on their blog. I recommend everyone putting the "Follow" option on their blog just in case something like this happens to anyone else.
Please let me know if I have missed you, and I apologize if I did:(
Thursday, February 19, 2009
Here are the pics I promised from when my best friend Christi and her husband, Dustin, came to visit, and from Valentine's Day. I can't wait til they have kids too:) I only wish that they lived closer to us:(
Thanks Christi and Dustin for traveling so far to see us:) And thank you guys for the adorable dress and onsies for Ayla and for the fun toy for Lil' Chris:) He hasn't stopped playing with it=) Thanks for wiping it down before you wrapped it too, you always think of everything;)
Thanks for babysitting and "making" us go out to dinner for Valentine's Day...it's been a looooong time;) You guys did such a great job with Lil' Chris and Ayla!! I appreciated the nice break from doing everything too;) You guys are the best!!!
Last but not least, thank you soooooo much Christi and Dustin for doubling Lil' Chris' medical fund and for making all the beautiful jewelry and for selling them for Lil' Chris!! You guys have such big giving hearts, and it shows how much you love Lil' Chris!! We can't thank you enough!!
Come visit again real soon:) We Love You!!!
PS. I'll post pics of the beautiful jewelry later, and Ayla's 3 week pic;)
PSS. Don't you just love the video where Lil' Chris keeps kissing his lil' sis;)
Wednesday, February 18, 2009
Cystic fibrosis gene cure closer:
Mucus in the lungs can lead to infection
US researchers say they are a step closer to developing a gene therapy cure for cystic fibrosis (CF).
In lab tests their altered virus effectively delivered a new gene to replace the faulty one that causes CF and completely rid the lung of disease.
Previous attempts have been hampered by the immune system mopping up the virus before it delivered its cargo.
The University of California work is published in Proceedings of the National Academy of Sciences.
Although the gene therapy is still in its infancy, it has already been used with some success in diseases such as haemophilia.
UK researchers plan to begin the first large scale trial of gene therapy in CF patients this year.
Proof of concept:
Around 8,000 people in the UK have CF and one in 25 are carriers for the condition. CF produces thick, sticky mucus that clogs the lungs and the pancreas, leading to life-threatening chest infections and problems with digestion.
Existing treatments only ease symptoms and life expectancy is low - most with CF die before they reach 40.
In the future it is hoped that gene therapy will provide a cure by replacing the defective CF gene which disables or destroys a protein known as CFTR.
In order to get the new, healthy gene into the cells, scientists use a harmless virus.
The University of California team, working with experts from the University of Iowa, found a way to make this virus more effective at entering lung cells.
More work is needed before this could be translated into clinical benefit for people with CF
A spokeswoman from the UK Cystic Fibrosis Gene Therapy Consortium
They mutated the adeno-associated virus to develop two major possessions - the ability to bind to different receptors or bind to a more plentiful receptor on the surface of lung cells and to make it past the cell surface membrane and into the cell.
Lead researcher Professor David Schaffer said: "In human lung tissue, it completely rescued the chloride ion transport properties of the cells after delivering the correct copy of the CFTR gene to replace the mutated copy of the gene that is present in CF patients."
They now plan to test the treatment further and to adapt the virus to gene therapy for other diseases, including Alzheimer's.
A spokeswoman from the UK Cystic Fibrosis Gene Therapy Consortium, which is trialling gene therapy in patients, said: "The techniques used in this research are innovative, but more work is needed before this could be translated into clinical benefit for people with CF.
"Although the results are positive in human lung tissue in a laboratory, it remains to be seen if it would work in the patient."
The UK CF Gene Therapy Consortium, funded by the Cystic Fibrosis Trust, are using a non-viral method to get the gene therapy product into the body and anticipate going to a major multi-dose clinical trial in 2010.
After reading this article, how could you not donate to help the scientist continue to find the CURE for our Lil' Chris and for all CFers?!?!?!
If you would like to donate on Lil' Chris' behalf or join our walk, please email me here.
Just remember...EVERY PENNY COUNTS!! I know all too well how hard times are right now, but we can't let that stop us. If everybody did, that could mean years off of Lil' Chris' life and all CFers lives.
Thank you in advance from the bottom of my heart,
PS. My MIL's Great Strides Walk will be on Saturday May 2nd. Please email me if you are around the Ocean City Boardwalk and would like to attend.
PSS. Click here if you still need convincing. It is an article of a 23 year old dying CFers wish for other CFers.
Tuesday, February 17, 2009
Lil' Chris is so loving to his lil' sister, it is sooooo cute. He loves kissing her, so I had to get video of it;)
Some of the other pics are Oma and Opa meeting Ayla for the 1st time, Lil' Chris standing on his bike to look over the gate(or try to open the gate;), Lil' Chris eating potato chips, Ayla playing Uno with us:), Ayla in her swing for the 1st time, Big Brother and Little Sister shirt pics, and I love the last video where Ayla sneezes...too cute=)
PS. Pics of Christi and Dustin's visit to come:)
Sunday, February 15, 2009
Saturday, February 14, 2009
Friday, February 13, 2009
Here is a pic of her enjoying a nice lil' nap in her new crib...
I forgot to tell you...I called our Pediatrician last Friday to ask her about a rash that Ayla got on her bottom, and since I had her on the phone, I asked about the one abnormal chromosome that Ayla had and what that meant. She said that I must have misunderstood her. Ayla does NOT have an abnormal chromosome. So she is NOT A CARRIER!!! YEA!!! PRAISE GOD=)
PS. BTW, the rash is gone;)
Thursday, February 12, 2009
Anyways, my mother-in-law(MIL) and father-in-law(FIL) were here from Thurs 2/5 - Mon 2/9. They were Ayla's first visitor's! I, along with my MIL took lots of pics:) Here are some of them... (I love the video's in this montage, they are so cute:)
Believe it or not, those were only the pics that my MIL took:) LOL It took me all day to just download those. I'll post the pics I took later;)
My MIL came up with the names "Oma" and "Opa" for the grandkids to call them. I think they mean Grandma and Grandpa in German. She tried to get Lil' Chris to say the names and he did! It was so cute! He is so smart!!
Special thanks to my MIL for staying up every night with Ayla!! It was soooooooo nice catching up on some much needed sleep;) And also thanks for cooking and doing the dishes and cleaning up all of the toys after every time Lil' Chris played with them!! She even made sure our house was in shape for our next set of visitors!! Thanks again Oma!!!
Special thanks to my FIL for helping my husband do some projects around the house;) We love the dimmer switch in Ayla's room and the dinning room;) Now we won't roast when we play our games at the table;) Gotta love game nights;)
Now we are waiting for our next set of visitors. My best friend Christi and her husband are coming this Sat-Mon. I'll try to get lots more pics;) I know Christi will:)
PS. 2 week pics coming soon:)
Monday, February 9, 2009
Saturday, February 7, 2009
I love his laugh! Sometimes he even has a fake laugh. You can see it in the video when I stop tickling him and he keeps laughing:) LOL
In the darker video(sorry about that), I finally got him on video saying "One!" He says it to make my husband pretend to drop him. He loves that game:) He only wanted to stop b/c he heard Ayla start to cry and had to go check to see if she was ok:)
And finally, I got him giving kisses to Ayla!! He is such a loving lil' boy when it comes to his lil' sis:) He gives her kisses every morning, nap times, and every night. Too cute!!
Thursday, February 5, 2009
Well, our first visitors are on their way here right now. Ayla will get to meet her grandparents(MIL and FIL) for the first time.
Have a great weekend everybody!
PS. Don't worry, I have pics and a video scheduled to be posted this weekend;)
Thank you all so much for all your wonderful comments on the news that AYLA DOES NOT HAVE CF!! My sister D was right when she said that you all have become like family to me. It touched me to know that this great news brought tears and goose bumps to so many:) Words cannot express my gratitude for all of your prayers. THANK YOU, THANK YOU, THANK YOU=)
PS. Special thanks to my sister D and my husband for posting and keeping everyone updated while I was in the hospital:) You guys did a GREAT JOB!! Feel free to chime in any time guys:)
PSS. Thank you all for all the great advice over the past couple of weeks. I'm still trying to catch up on everything, so sorry if I didn't respond. It was much appreciated though. I never knew that about the saline and about the abnormal chromosome. Even if Ayla might be a carrier, I'll take it!
Here is what Susanna said in her comment about the abnormal chromosome(Susanna recently got the same great news that we got about her baby Levi):
Oh Dear M, That is sooo wonderful! Just like everyone else, I couldn't hold back the tears of thanksgiving that came into my eyes. Thank you God! Just like Charm said, she will be a wonderful special blessing to lil Chris and to all the family. Love and Rejoicing, Susanna
ps...I'm sorry to say that many pediatricians (mine included) don't completely understand the 'normal' test results combined with the 1 abnormal chromosome. They told me the same thing about Levi. You can find out for sure by calling Lil Chris's docs. Each of us have two chromosomes...if both chromosomes carry the CF gene we have the disease CF. If only one chromosome is abnormal with the CF gene we are a carrier. If neither of our chromosomes carry the CF gene we are not even a 'carrier'. A CF blood test will come back 'normal' only if the person does not have the disease CF. 'Normal' test results do not mean Not Carrier. Please, please do not let this info dampen your spirits. Even if Little Ayla really is a carrier, it still means she is completely healthy...just like you and I. She'll never have to take enzymes, or do treatments or suffer from this dreaded disease. It's absolutely incredibly wonderful!! I'm sooo happy for you all!!!
Wednesday, February 4, 2009
Ayla's CF newborn screening test came back...
YEA!!!! WE ARE SO EXCITED!!!
Our pediatrician called and said that it came back normal and that she is NOT EVEN A CARRIER!! Isn't that GREAT???
You know...it's funny...I almost didn't believe her! I kept repeating, "Are you serious?" and "She's not even a carrier?" Last night, I sat in the rocker with her and just started crying, b/c I had just changed her diaper and I thought that maybe it was a little bit greasy (a sign of CF). And yesterday I even gave her 1/2 a Creon 5 just in case. (I was going to post the pics today, she did such a great job taking them.) I was almost convinced that she had CF. I even made sure I gave her 1/2 a Creon 5 enzyme this morning before I fed her! But, I guess it was just my paranoia.
You have no idea how relieved I am. I feel like I can breathe again. After 9 long months....I can finally breathe again.
Although... the doctor did say that she has one abnormal chromosome. I was too excited to ask too many questions, plus I couldn't hold back the tears:) The tears of joy...the tears I was praying so long for.
So, does anybody know what this abnormal chromosome might mean???? Please let me know.
PS. Thank you everyone for all your prayers that Ayla would not have CF. I'm so thankful for each and every one of you. See......the Lord does answer prayers =)
I have to go celebrate now:) YEA!!!!!!
Tuesday, February 3, 2009
Cindy won the time with 3:01pm being the closest (Julie won with the original guess of 3:42pm and Angela was a close second with 3:47pm;)
Oma, Opa, and Angela all won the weight with 7 lbs. 14 oz. exactly
Opa won the length with 19.5 exactly
Monday, February 2, 2009
Ayla's first time out...
I took this pic with my phone and text messaged it to my sister D , my husband, and my friend Christi while we were waiting for the doctor to come in. She is all naked wrapped up in a thick warm blanket. My sister D said that it looks like an Anne Gedes picture:) Maybe I should send it in and she could be on a calendar or something;)
Sunday, February 1, 2009
I just realized that this is our first family pic!! All 4 of us, except you can't see Ayla at all;) We'll try to get more pics of us all later. What a good big brother though, huh? Second day home and he is already helping feed her=)
As for the birth, it couldn't have gone any better!! My water broke at 10am and the contractions didn't really get bad until about noon. Then I got the epidural around 2pm and went from being 5-6 cm to 10 cm in about 5 minutes!!! The guy who did the epidural didn't even get out of the room before I felt her slide right down into position. The nurse checked me...and then she called my OB and said "Hurry up...we have a baby coming soon!!" I couldn't believe how quick I went to complete! Next thing I knew, I pushed one set of 3, another set of 3 pushes, my OB said something about using the vacuum and I said no (she used the vacuum on Lil' Chris) and gave it my all on the next push and she was out!!! She had the umbilical cord wrapped around her neck once, but no other problems... that is for Ayla anyways.
I on the other hand had some extra bleeding afterwards that never went away. So at about 11pm my dr. came back to do a D and C. I was so scared, b/c I was all alone. I just kept praying and praying that everything would be fine and nothing bad would happen. I had to get a spinal epidural which made me numb from the waist down so that my dr. could go in and scrape anything out that was left in there. Which she did find something, either a blood clot or a membrane. They sent it to the lab to find out. I was just relieved that they were able to find something so the bleeding would stop.
So all throughout the night I still kept bleeding, which worried me more. At one point, I asked the nurse..."What will they do next if the D and C didn't work?" She never answered me, she just said they would call my dr. and see what she wanted to do. So of course that made me worry more. Needless to say, I didn't get much sleep that first night. I was dreading the news my dr. was going to give me in the morning. Luckily when my dr. came to check on me in the morning, she said that it looked much better and that I could finally get my IV taken out and that I would be fine!! I was so relieved, I felt like I could finally take a breath. I could tell my husband was relieved too when I called him with the good news.
Anyways, back to Ayla being born...
When they handed her to me for the first time...I just starred at her beautiful lil' face! I couldn't believe she was ours! God has blessed us with so much over the past couple of years...first lil' Chris, and now lil' Ayla. Isn't she just beautiful?
We have our first dr's appt on Monday with the pediatrician, b/c she is a little bit jaundice. She also lost 9 oz in the hospital. I'm actually glad for the early dr's appt. A CF mom(and a new mom) is always curious about weight;) Am I right?? I'm praying that her first dr's appt. doesn't go like her brothers first dr's appt. Click here to read about it. (I'll finish his story some day;)
So I asked what we can do to help with the jaundice and they said to just keep her well fed. Since I don't think she is getting enough through breast feeding, we have also been giving her a bottle after breast feeding. She actually drinks the whole 2 oz every time!! It's too early to tell if she is having any signs of CF yet. But I'll keep you updated and let you know if I suspect it. So does anyone have any more advice about her being jaundice, b/c I have no clue??
Also, I was told that we may get the CF test results back by the end of this week!! They said that if there is CF in the family already, then they put a rush on it. So hopefully I will have some GREAT news for you by Friday...please continue to pray for no CF!
I was surprised to see the lil' things my husband did while I was in the hospital. I walked into our room and on my night stand was a picture frame with me and Ayla. It says, "Like mother like daughter, the nicest compliment there is." Isn't is so cute?
And then when I went into Ayla's room, he had a picture frame of her on her dresser...isn't he the cutest husband ever to do all this and surprise us? He's the best husband and daddy ever!! =)
Well, my lil' sweet baby girl is calling me:) I will update more later and get some slide shows going. I just wanted to let you all know that we are all doing great and that I am recovery great from the birth and D and C. Thank you all for the prayers for Ayla and I. It means so much to us all. Please continue to pray that the CF test results come back quick and are negative.
Thanks again for all your prayers,