When I was reading Daniel's Mom's comment, it reminded me that I forgot to tell you that I met another CF mom here in my town. Actually, we are practically neighbors! She lives just up the road! She was shopping in my store the other day when we did the Jeans for Genes Day, she saw an associate wearing the Great Strides sticker and told her that she has a 4 year old daughter with CF. Kaitlyn came and told me afterwards, but she wasn't around at that time. A few minutes later, she found Kaitlyn and then me. I was so glad she found me, b/c I really wanted to talk to her. It's not every day you meet a CF mom. We exchanged phone #'s, and I look forward to talking to her.
So far, I've only talked to Daniel's mom and one other CF mom who's # I got from Beth at work. Oh yeah, and of course now my blogger CF mom's ; ) Susanna and I think anonymous or neilcharm was the other one (or maybe anonymous turned into neilcharm???). I hope you still check in with us. I miss talking to you in the comments :'( I'd love to hear an update on how the program is going!
Daniel's mom was telling me that she found out that there is another CF mom here in our town that has a 3 or 4 month old. Hopefully we can all get together and talk and share stories over lunch or something. Don't worry, we will all get babysitters ; )
M
PS.
I'll explain more later on how Daniel's mom and I met and more on the other CF mom too. I figured I should get their permission first before I blog about their story. Hey Daniel's mom, if you are reading this and want to share your story, do so in the comment and then I can cut and paste it on the blog. I better go, I hear Lil' Chris playing with something he shouldn't be; )
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5 years ago
2 comments:
Hi I just want to tell you that I read your blog every single day. I may not always comment but I adore the pictures of Lil Chris and the comments Aunt D and yourself give. About the programme, my daughter tells me at the moment she has had MRI, CT scans, bloods, exercise programmes, physio (which is no longer percussion but breathing from the diaphragm, coughing up the sputum and is on DNASE which is a very expensive drug - in South Africa only the very rich can afford this medication whereas in London she gets this meds on the NHS because she attends the CF clinic at the Royal Bromton Hospital (we jokingly call it the Royal Brompton Hotel). She does all her IV treatments at home and at work - the company she works for have a medical room which she has permission to use at any stage. This programme is a 3 year stint, whereby they measure, scan, bloods, sputum, diary, etc....and she has to go to different hospitals in Britain, mainly in the London CBD area for different sections of the programme. When she becomes ill with infection, the programme gets halted until she is better and then they carry on because the results can differ quite a bit with the antibiotics. Thats all I know for the time being but that she is doing so much better there than here in SA. I do miss her terribly but she is a determined little miss (shouldnt call her that - she's 27yrs old) and has goals set in her life that she is determined to achieve no matter how long it takes. Whenever I do get info from her regarding the progress of the programme I will be sure to let you know. Promise. Afterall, this programme is for the benefit of all CF'ers. So Hold thumbs. God Bless you and your whole family and I hope this is a little bit of hope for you. Till next time....please keep us updated about Lil Chris.....brings back sooooooo many memories when C was growing up......hugs xx x x x x x
Hi M,
I would be happy to share Daniel’s story, but writing is not my strong point so bear with me. Daniel, who will be 3 in July, is the youngest of four children. We also have Jonathan (13), Sara (9) and Kate (7). With all of my pregnancies, my husband and I opted not to have any prenatal testing done. Even though the doctors pushed it when I was pregnant with Daniel (I was the ripe old age of 39), we didn’t feel the need. Daniel was born at 10lbs 9 oz. Absolutely beautiful. At two weeks of age, Daniel started throwing up all the time. I had nursed three other children, and I knew the difference between spitting up and vomiting. Thus began 6 months of weekly weight checks and two pediatric gastroenterologists (one tried to convince me that it wasn’t Daniel throwing up that was causing the weight issues it was my faulty breast milk!). Besides throwing up, Daniel had diarrhea, wheezing, a diaper rash that wouldn’t go away and generally not looking well. I cannot tell you how many tears I shed wondering if anyone was going to figure out what was wrong. On 1/16/06, when Daniel was almost 6 months old, I took him to the doctor’s for his wheezing and weekly weight check. Daniel had lost an entire pound in one week and looked like he was retaining water in his legs. The doctor said he thought Daniel might have Cystic Fibrosis, and needed to be admitted to Akron Children’s Hospital. We spent 15 days in the hospital where the diagnosis was confirmed. Due to the CF, Daniel is pancreatic insufficient which meant that all the nursing he had been dong for 6 months went right through him. At the time of diagnosis, Daniel was very malnourished and his vitamin and mineral levels were a mess. When we left, Daniel had 4 new medications to take everyday, a feeding tube, breathing treatments and we learned cpt. For us the diagnosis was a relief. We had worried so long and now we had a treatment plan in hand - we could be proactive. In case you are wondering, there is not a history of CF on either side of our families. Fast-forward, Daniel will be 3 in July and is doing great. Dealing with CF has pretty much become the norm in our house. Every day he does 3 breathing treatments, 1 hour on his vest, takes 2 vitamins, 1 Prevacid and 2 enzymes every time he eats. He is a champ about it! M and I were able to meet when our CF Clinic asked me if I would talk to a new Mom about CF. I jumped at the opportunity to help. I could not imagine being a new mom and having a baby with CF, and hoped I could offer some support. The connection has also been great for me. When M and I talked on the phone the other day, and I was talking about Daniel’s cultures. I didn’t need to explain my frustration that Daniel was growing new bacteria , M knows and understands. The only sad part is that because of cross-contamination, our boys will not be able to play together. I think I having taking up enough of lil Chris’ blog, if you got this far, thanks for reading Daniel’s story.
Daniel's Mom
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