Friday, December 9, 2011

18 Months

Last week Lily had her 18 month check-up. She is doing great! Her gross motor skills are completely caught up and she answered all of the doctor's questions ("What sound does a cow make?" "Where is your eye?" etc.). She is still a little peanut, just like her daddy was at her age. Her weight was 20lbs 4 oz (5th percentile) and her height was 20-3/4" (7th percentile).

I feel like I fall in love with every stage of her life. I always think to myself, "I love this age!" The past month has been awesome. Her language has taken off and I love hearing her say new things. Lately she always likes to point out when someone is wearing a hat. She also likes to stand on chairs (which she knows she is not supposed to be doing) and say "Tall! Tall!" and then give Greg and I a michevious smile and say "Sit! Sit" and quickly sit down.

I have been feeling really good the past week. I'm not sure why, but my cough has really subsided. It's been so nice!

Sunday, November 27, 2011

Rush Immunotherapy

Before I talk about my allergy shots, I want to answer a question about baby shampoo. There is an article here about why I add it to my sinuses rinses. Basically, it helps rinse away thick mucus and can inhibit the formation of pseudomonas biofilms.

So, last week I began my allergy shots with Rush Immunotherapy, which is just a fancy term for "getting the first three months of allergy shots out of the way at once." I got a total of nine shots over the course of about 2-1/2 hours. It was not bad at all. The first five shots barely hurt. Then next four (which was a stronger dose) felt like a bee sting, and my arms were itchy and got welts on them, but that was it. Totally worth it. Now I will start getting weekly shots for at least nine months.

One strange thing I noticed at the appointment was the result of my peak flow test. I have a peak flow meter at home, but I haven't really used it. At the allergist, they had my do a standard pulmonary function test, and my numbers were the same as they have been at CF clinic (100% +). But, then they had me do a peak flow measurement, and it was much lower than it should have been for someone my age and height, according to the nurse. I should have blown 488 L/min, and it was all I could do to get that thing up to 400 L/min. I asked the allergist about it, but he didn't have much of an answer other than, "The peak flow meters take practice." Well, I have since been "practicing" at home and I still can't do any better. I'm going to have to ask my CF doctor about this at my next appointment.

Here's to hoping the shots help with my CF symptoms!

Monday, November 21, 2011

My New CF Routine

Wow, I can't believe I haven't blogged in so long! I have no excuse other than I have been reading and watching TV after Lily goes to bed, but I'm going to try to make more time for blogging.

These past months have been great. Lily has really outgrown her fussiness and is an absolute joy to take care of now! I am so in love with being a stay at home mom. We have a good routine established. Usually we go for a jog, shower, head out to Gymboree, the park, or a play date, run an errand, eat lunch, nap (well, Lily naps while I clean), and then go to the gym or cook dinner. She's very good at playing independently or watching Sesame Street while I do my meds.

Speaking of meds, the last time I blogged I had just gotten rid of my first PICC line. The PICC line was a big kick in the pants for me. It made me realize that I need to do everything I can to keep myself healthy for a long time. So I've been doing a lot of reading about CF treatments and have gradually been trying new things. And I think they are helping.

At my August clinic visit, three months after I started Cayston, my FEV1 was up 2% to 115%. Not a huge jump, but it was the highest it had been in a while. I asked my doctor about trying n-acetylecystine (NAC) and Pulmozyme. He said he didn't really know if NAC would help but that it wouldn’t hurt to try it, and he hadn't put me on Pulmozyme because he wasn't sure the benefit would outweigh the time it takes to neb the medicine. Well, I can definitely say that the Pulmozyme is worth it. I immediately noticed a difference. It really helped with my junky cough - it was almost like it dissolved my mucus. LOVE IT. I'm still on the fence about the NAC. I take PharmaNAC, which is what is being used in the clinic trials. The trials showed it reduced markers of lung inflammation in CFers, so I'm still taking it, but I don't notice any immediate affect like with Pulmozyme.

I also decided to be more aggressive about treating my sinus disease. When I was on the IV antibiotics, my sinuses felt the best they had in years - no postnasal drip or headaches. Two weeks after the PICC was removed, the symptoms came back. So I went to my ENT and asked if there was anything else I could do. I did not find him very helpful, so I asked my CF doctor for a referral to a new ENT. This new guy suggested I try adding Alkalol to my sinus rinses, (the recipe was 1/4 cup Alkalol, 3/4 cup water, a sinus rinse packet, and a few drops of baby shampoo), and use a nasal spray that consisted of two Singulair tablets dissolved in a 1.5 fluid ounce bottle of saline nasal spray. WOW. What a difference that made! My sinus symptoms were so much better! I almost wanted to kiss him. Even my CF doctor mentioned that I didn't clear my throat as often. So, now my sinus routine consists of the Alkalol sinus rinse, the Singulair nasal spray, a Xylitol nasal spray, and Nasonex.

After three months of the new sinus regime, NAC, and Pulmozyme, my FEV1 was up another 3% to 118%! I am so excited to almost be back at 120%, which is what it was before I moved to Austin from the northeastern US.

And now it's time for Phase III of operation "Get in Peak Shape." My CF doctor wants me to try taking 500 mg of Azithromycin every MWF. It's supposed to help with inflammation. I tried this about eight years ago and noticed it helped, but it also hurt my stomach, so I quit taking it. But, I figured I could give it another shot.

In addition, tomorrow I am starting allergy shots. I'm doing what's call "rush immunotherapy" where I get the first 12 weeks of shots done in a matter of 3 hours. I've been putting it off because it's a lot of time (a shot once a week for at least a year) and I've heard it doesn't always help. But now I have the time and want to give it a try.

My next step is to be better about airway clearance. I have always exercised 4-5 days a week, but I hardly ever vest because it's time consuming and I don't notice that it helps. (And, honestly, I also hate how the vest is so huge and cumbersome.) So, instead I am going to try keeping an Acapella in my car and using that while I am driving around and doing it for a few minutes here and there when I am feeling junky.

So, there’s a long update from me! I am hoping to do more of these from now on!

Wednesday, April 27, 2011

PICC is Gone!

Good news! My FEV1 was 113% and I the PICC is gone! I met with the physician's assistant at my CF doctor's office and I asked a ton of questions.

The PA took my questions to the doctor. He said that, if I want to be aggressive, I can go back on a bi-monthly nebulized antibiotic. My understanding is that aggressive treatment leads to better health, so I agreed, (even though I don't really want to do another another neb!). Luckily, instead of going back on Colistin, they want to put me on Cayston. I say "luckily" because the Cayston only takes three minutes, three times a day, is portable, and the timing is flexible - I just have to do it at least four hours apart, so I could do it one day at 8:00am, then at 5:00pm, and then at 9:00pm, and then the next day do it at 8:00am, noon, and 5:00 pm, etc.

I also asked about the possibility of doing tune-ups in the future. As much as I hated being on IVs, I must admit that they made me feel awesome. My cough and post-nasal drip are totally gone. The PA agreed that it may be worth going back on IVs once a year even though my PFTs are fine. So, despite all the complaining I did during these past two weeks, this is something I am definitely interested in. I want to see how long my cough stays away. If it's a significant period of time, I think it's worth two weeks of suckiness. Not only because the cough is annoying, but also because I can't imagine that there's not some sort of lung damage going on when I have that cough, despite steady PFTs.

Of course, this morning I woke up with a sinus headache :P I made an appointment with my ENT for tomorrow because you would think two weeks of IV antibiotics would take care of my sinuses!

Tuesday, April 26, 2011

Trying the Crib for Naps (Again)

Well, here we go again. I've tried to get Lily to nap in the crib twice, and both times it was a big FAIL. She has been napping in the swing for most of her life (or the car seat if she falls asleep in the car). The first time we tried to get her to nap in the crib was at four months. We tried cry-it-out and she would cry for a while, fall asleep for 20 minutes, and then wake up again and cry until I got her, (and I let her cry up to an hour and a half to try to see if she would fall back to sleep). The same thing happened when I tried at 6 months, and I tried for ten days that time! It was awful because she was soooo tired and fussy from napping so poorly.

It's been almost five months now, and I have been procrastinating on trying again. After all, she sleeps well in her crib at night, so I'm not worried that she is going to need a swing for the rest of her life. But, two things have happened that make me think it's time to try again: Her swing broke, and she learned how to roll from back to belly. I've been getting her to nap by putting her in the broken swing and giving it a big push, which has made it swing enough for her to fall asleep. But, today that didn't work and I watched her in the monitor as she was wiggling all over the place, trying to roll over in the swing! So, now she's been in her crib crying for 15 minutes. I hate this!

Monday, April 25, 2011

Almost Done

I am supposed to get this PICC line out tomorrow, and I am so glad! I have an appointment with at CF doctor's office, and they are supposed to take it out if everything looks good. I will be shocked if it doesn't, considering I feel great. I actually feel better than I normally do when I am not sick. I typically get a cough from mid-morning until lunch time, but that has been 100% absent this week. I am curious to see what happens once I stop the IV antibiotics.

This past month has been so exhausting, I have that I-want-to-throw-myself-off-a-cliff tiredness that I had when Lillian was a newborn. One more day. One more day. I think I am going to sprint into my bed right after Lillian falls asleep tomorrow night.

Thursday, April 21, 2011

I Must Be Crazy

For some reason I thought it was a good idea to administer the Ceftaz in the middle of the night instead of at something reasonable like 10:00 PM and 6:00 AM. Greg and I both agreed 3:00 AM made sense "because it's easier to go back to sleep in the middle of the night." (That's a quote from Greg.) Plus, then my daytime dose would be at 11:00 AM, which would make it a lot easier to get out of the house and do stuff, instead of having to worry about running home to take my med out of the fridge.

Right. Greg has been awesome and getting up at 2:00 to take the Ceftaz out of the fridge so that I don't have to wake up at 2:00 and 3:00. And he can go right back to sleep. The problem is, I need to be "on" in order to administer the med, so, once I have been awake and concentrating for 15 minutes, I have a hard time falling back to sleep. Added to that the facts that I was up coughing half the night for two weeks before starting IVs, I can't go to bed before 10:00 because I have to pump, and Lily wakes up at 6:00 every morning, (and sometimes earlier), I am absolutely exhausted! And this morning I could not fall back to sleep after my alarm went off at 3:00. I think I am going to start shifting my schedule for the last few days of this medication, because I feel like I have a newborn without the screaming baby.

Oh, and CF clinic called earlier this week and wants me to be on IVs for two weeks. I almost started crying. They said it was because I was having such a hard time kicking this thing and orals didn't work. I was confused because I thought the reason oral didn't work was because they were treating me for Staph when I had PA. Anyway, the IVs have worked great and I am staying on them for two weeks. I've felt back to 100% for several days now, so hopefully the extra days on the meds are doing some hard-core ass kicking.

I will admit that I did find it ironic that they also told me they wanted me to do a 14-day course "because you are tired from taking care of a baby." Actually, I am tired from taking these medications!

Saturday, April 16, 2011

Day Five on IVs

Being on home IVs is not too bad. I administer Tobra once a day and Ceftaz three times a day. The Ceftaz only takes about 10 to 15 minutes from the time I start washing my hands until I am throwing everything in the trash. I do it at 3am, 11am, and 7pm, so the worst is having to wake up in the middle of the night. For the 11am dose, I put The Muppet Show on TV to distract Lily. And then I don't have to mess with my IV for the rest of the time I am home alone with her.

Things are pretty busy once Greg gets home from work. The Tobra takes over an hour to infuse, so I start that when he gets home at 5:30. I do albuterol and hypertonic saline at the same time, and Greg throws together an easy dinner while he watches Lily. And then we all eat. (while the Tobra is still being infused). Then I make some ginger tea because the Tobra makes me feel like upchucking. After that, I administer the 7pm dose of Ceftaz. And then I vest for 20 minutes. Shortly after that, it's time for Lily's bath, so Greg does that while I rinse my sinuses and clean the kitchen. Then I comb her hair and brush her teeth, and Greg reads her a book and puts her to bed. She cries at bedtime now, which sucks, but it's better than risking her getting a high dose of Tobra through my milk. At 9:30, I pump for 20 minutes and then go to bed. I will say that this would not have been manageable if Greg had not canceled his work trip!

Oh, and perhaps most important of all, I am feeling better. I'm not 100%, yet, but I have more energy and I am coughing a lot less.

Wednesday, April 13, 2011

Great News (Tobra and Breastfeeding)

On Monday night, Greg asked me why I can't nurse Lillian while I'm on IV tobra. I told him I wasn't sure and went to Dr. Google. Everything I found online said that it Tobra was a pregnancy category D medication, but that it was safe for breastfeeding. Dr. Google said that, because Tobra is poorly absorbed when taken orally (and hence the reason it's not available orally), it is not a breastfeeding risk.

I know not to trust what I find on the internet, but it made me want a second opinion. So, yesterday morning I spent about three hours on the phone.

I called Lily's pediatrician's office, and the nurse seemed confused as to why my CF doctor said I couldn't nurse. She said that it was fine to nurse while on Tobra. I called my lactation consultant. She looked up the drug in Dr. Hale's book and read that it was safe for nursing. She then referred me to Dr. Hale's Infant Risk Center. The Infant Risk Center has a hotline you can call to find out about the safety of a drug while pregnant or breastfeeding. The Infant Risk Center told me the following (I was typing while the woman spoke):

Tobra is considered a lactation risk L3, (on a scale of L1 to L5, which L1 being the safest and L5 meaning do not nurse while on this mediation). They said that levels in milk are low but could cause changes in a baby's gut flora. They quoted a study where a woman was given 150 mg three times a day. Tobra was not detectable in any milk samples, and no side effects were noted in infant. In another study, a woman was given 80 mg every 8 hours and the Tobra was detected in her milk at very low levels. They also explained that 2.6% of what I get ends up in my milk and that Tobra has a 2-3 hr half life. Based on this, they suggested waiting 3 hours until I nurse so that half of the Tobra would be out of my system.

Both studies and one additional one are listed on this site:, which the pharmacist at the home infusion company printed out for me.

After getting all of this information, I called my brother (an MD) and sister-in-law (a pedi NP). My sister-in-law suggested that I pump and dump about three hours after administering the Tobra, just to be extra safe. This is based on what they recommended to nursing women who were taking illicit drugs (apparently not all drugs are re-absorbed back into the bloodstream the way alcohol is, so the levels in my breastmilk may not be the same as the levels in my blood).

I also passed the information on to my CF doctor. He confirmed that his recommendation was based on the pregnancy category. He said he was okay with me nursing as long as I had done my research, but wanted to make sure that I knew that the affect of doing so is unknown (as it is the case for most drugs!).

Based on all of this, here is the plan: Because I only have to administer Tobra once a day, I will do it at 5:30pm and won't nurse Lily before bed. I will pump and dump at 9:30, (I rented a hospital-grade pump because I haven't been responding well to my Medela Freestyle). And that will give us at least 12 hours (4-6 half-lives) between administering the Tobra and nursing.

This is what we did last night and it went surprisingly well. The last time I nursed her was 4:00. After that, we tried to give her formula, but she rejected it. Instead, we gave her an early dinner at 5:30 and a snack at 7:30. Greg put her to bed at 8:00 and she cried for a few minutes and went to sleep! During the night she only woke up a couple of times and cried for a few minutes, but that was it. MUCH easier than I thought it would be!

I am so relieved and so happy that we can continue nursing!

Tuesday, April 12, 2011

Well, This Just Sucks

My culture came back and my suspisions were correct - I have pseudomonas aeruginosa (again). I haven't cultured it in three years, so that combined with the fact that it was present in a small amount has my doctor hopeful that we can eradicate it. I felt silly admitting this, but I was wondering if I might have it again because my phlegm had this weird sweet taste, which I've heard is typical for PA (from other CFers).

My doctor wants to be really aggressive. The last time I cultured PA for the first time was in 2002. I was seeing a different doctor and he put me on three months inhaled TOBI and oral Cipro. That didn't work, and I was on an inhaled antibiotic every other month until I got pregnant with Lillian. (Although I stopped culturing it in 2008. I'm not sure why I stopped culturing it, though.) So, my doctor wants to put my on IV Tobramycin and another antibiotic (that I didn't catch the name of). And he says I can't nurse while I'm on Tobramycin.

I am really upset about this. Lily doesn't take a bottle but will drink water out of a straw sippy, so we are going to give her formula in the sippy (I don't have a freezer stash because I stopped pumping when she wouldn't take a bottle). And I am going to rent a hospital grade pump so I can pump and dump. I am so afraid she is going to cry and think I am rejecting her! It breaks my heart. And I am also afraid that, after 10+ days off the breast, she will not take it anymore. I am not ready for her to wean! I love our snuggles so much.

I've had a huge lump in my throat ever since I got the news about the Tobramycin. This month can suck a big one. Not only have I been sick and my husband has been traveling a ton, I had to put my cat down, and now I'm morning the potential end of nursing :(

Monday, April 11, 2011

I'm Feeling Better, But....

The doctor still wants to put me on an IV :( Yesterday the gunkiness in my lungs subsided significantly, but last night I coughed so hard that now my upper-left back hurts when I breath or move. So, the doctor wants to do the IV just to make sure we knock this thing out. I am supposed to get the PICC line tomorrow. I am very curious to find out what I am culturing.

Friday, April 8, 2011

Ugh, I May Need an IV

Today I called my CF doctor because I wanted to know when I should expect this nasty cough to go away. Because it was Friday, he wanted me to come in just to make sure things were okay. Annnnddd...they weren't. My PFTs were down 20% and he said I sounded like I had bronchitis. He agreed that I looked fine, (and, honestly, I feel fine except for this cough), but he was concerned because I had already taken two oral antibiotics, and he was worried about me permanently losing lung function.

So, he talked to me about two options: Giving the Augmentin a bit more time and adding Cipro, or going on an IV antibiotic. This is the first time I've been this sick since I've become his patient, so he wasn't quite sure which option to chose. He said that, if I were one of his "normal" CFers, it would definitely be an IV. But, because I'm so healthy and even non-CFers can get nasty lingering coughs after a bought with a bad virus, he wasn't as certain. I pressed him some more and he told me he would rather be aggressive, so I agreed to the IV.

The plan is to administer an IV antibiotic at home for 10 days. Based on my previous sputum cultures, he will treat me for Staph, which means an antibiotic every six hours. However, I was able to provide a sputum sample at the appointment, so that may change when the culture results come in next week.

I am feeling extremely nervous and overwhelmed by all this. Just the thought of losing lung function scares me. The idea of having to get up in the middle of the night when I am already really tired sounds like a drag. And Lily has been teething, which means really fussy and clingy. It's going to be hard to manage the treatments and take care of her, but I do have a plan - vest during naps and after she goes to bed. And, luckily, I'm still allowed to move around when the IV is being administered, so she'll just have to entertain herself for a few minutes whiles I get it set up. And, if I get really desperate, I can turn on Sesame Street.

HOWEVER, because I didn't see the doctor until Friday afternoon, he said they wouldn't be able to place the PICC line until Monday. So, I was sent home with a prescription for oral Cipro and an order to use my vest four times a day. My doctor said, if I get better over the weekend, I probably won't need the IV. So, I have everything crossed that this will happen!

I am hanging my hope on the fact that, way back in college, when I used to get sick like this, I got better without IVs and didn't lose lung function. I have only needed IVs once in my life, and that was 22 years ago! I just can't remember how long it took me to get better on oral antibiotics - it's been 10 years since I've been sick like this! I seem to remember being sick for about a month (when I used to get bronchitis). I definitely remember that I was sick long enough that I was fairly out of shape by the time I was able to run again (I remember telling my field hockey coach, "I ran an 11 minute mile today" and her not being impressed :P ).

So, I could use lots and lots of :::GetHealthyFastVibes:::

Wednesday, April 6, 2011

More Augmentin

Lily seems to be feeling a lot better now - this sickness was just a little cold for her. For me, however, I definitely got some sort of CF-infection. I still felt pretty crappy after finishing the prednisone and Z-pak. Yesterday I felt like I was drowning in mucus, between coughing up junk and not being able to breath out of my nose. So, my CF doctor called in a 14-day course of Augmentin and Flonase. He also told me to call my ENT if my sinuses do not feel better in a few days. I am so over being sick - this winter has been rough!

Sunday, April 3, 2011

I Spoke Too Soon :(

Now Lily is definitely sick. She started going downhill yesterday and woke up this morning with a runny nose and cough. So we are following her doctor's instructions: Xylitol nasal drops, Advil, Muxinex, and Xopenex. I really hope she doesn't get even close to as ill as I have been!

Friday, April 1, 2011

Sick Again!

It's just me this time, thankfully. I started feeling crappy last Wednesday and figured it was allergies. But, by Thursday night, I felt terrible - I kept waking up shivering and, when I took my temperature in the morning, it was 101.7. My CF nurse sent me to the RediClinic at the local grocery store to get a flu test. The test came back negative, but, because my symptoms all pointed towards the flu, the test results were only 80% accurate, and I had just rinsed my sinuses, the nurse practitioner at the clinic put me on Tamiflu.

I got my flu shot, but apparently there is a strain going around that the flu shot doesn't prevent. "Great, now Lily's going to get it," was all I could think. Despite the Tamiflu, I have kept getting worse until I had asthma-like wheezing that was keeping me up all night, so, on Tuesday I called my CF nurse to tell her I still had the fever and had respiratory symptoms. So, my CF doctor prescribed five days of prednisone and a Z-pak. I am on day three of these meds and am happy to say that the fever was gone yesterday. I still can't really breath out of my nose and am having a lot of wheezing, though. And I am coughing up green junk.

Thankfully, my mom just happened to be in town for 10 days and she was able to help while I spent most of my time laying on the couch! It was hard, though, because Lily is going through separation anxiety and kept looking at me and fussing. I felt really bad and kept getting up and playing with her on the floor. My mom was especially awesome because, each morning, she would take Lily after she nursed so I could sleep a few more hours.

Needless to say, we hadn't been out of the house in over a week. And, whatever I had, I must had given to Lily because yesterday she got a low fever of 99.9. I freaked and rushed her to the pediatrician because I was scared that she would get even more sick than I was. The doctor said that her only symptom was a red throat, and he said there was no way she had the flu. Today she seemed almost 100%.

So, whatever I have, it's not the flu and my guess is it caused a CF-lung infection because it barely affected Lily and no one else caught it. Hopefully I will be sleeping better soon because this wheezing thing blows. I've been doing albuterol every four hours and sometimes I'm dying for it by the time hour four comes around.

Oh, and in the midst of all this, my poor cat got really sick and I had to put him to sleep. He was my buddy for 13 years and I feel sick over it. I may write more about this later.

In fun news, Lily is advancing a bunch these days. She's getting closer to crawling, pulling to stand more often, and moving around more on her feet. Yesterday she was standing at her activity table with me sitting behind her, (as we always do so she doesn't fall on her noggin'), and she used my arm to turn herself around 180 degrees and gave me a hug. Awwww. Last week she started clapping, today she discovered how much fun it is to splash in the tub, and she is obsessed with reaching at things she finds interesting (her current fav is the 8x10 picture of herself ;). She's a little chatter box, too, which is fun. And she loves to swing outside - so much that, if you make a move toward the front door and then turn away, she will cry because she wants to go outside.

The downside of all this developmental stuff is that she has been sleeping less. She won't sleep past 5:45, and we're lucky to get two one hour naps out of her. Today it was two 40 minute naps. I'm ready to go back to the days of waking at 6:30 and 1.5 hour naps!

Wednesday, March 9, 2011


Tonight I was bringing Lily to bed and I said, "Say Goodnight to Daddy!" and Greg said, "Goodnight!" About 10 seconds later, Lily whispered, "Goo-nie." I just about died.

Monday, March 7, 2011

9 Months!

Lillian is nine months old and being a mom just keeps getting better and better. I love her so much! It seems like she gets happier every month. We are in a really good routine now - Lily sleeps from 8:00 PM until 6:00 or 6:30 AM straight through the night (:::fist pump:::), and then she naps from 9-10 and from 2-4. I love that Greg and I get a few hours together each evening, and I get some time to get stuff done around the house during the day.

We are all recovered from bronchiolitis and Lily no longer needs the Xopenex or Pulmacort. I did get another case of thrush from starting the Symbicort and taking an antibiotic, so my CF doctor wrote me a prescription for Nystatin. Because the Symbicort has really reduced my nighttime wheezing, he also wrote me a prescription to continue swishing Nystatin every few days indefinitely. Hopefully this will keep the thrush at bay, (people who have been following this blog for a while may remember how I could horrible thrush a few years ago when I started taking Advair, and I had to stop taking it).

Right now I am in the process of adding dairy back into my diet. I am doing this as described in the book Baby 411. So far I've added cheeses and yogurt and Greg and I have not noticed an difference in Lily. This week I am eating ice cream and next week will be milk. My fingers are crossed that Lily won't start spitting up again!

And, Lily had her 9 month appointment last week. She weighs 17 pounds, which puts her into the 20th percentile. She is also in the 20th percentile for height and the 75th percentile for head circumference. I did talk to her doctor about the fact that she is behind average on her gross motor skills (she is not crawling yet and as still never rolled from back to front). Her doctor was not worried because Lily has been making progress, which is what the doctor really wanted to observe.

This is what Lily has been up to lately:

-She does scoot backwards and around in a circle on her belly, but she does not like being on her belly. Greg and I still make sure she does three 10-minute sessions of tummy time each day. We try to distract her with toys and books, but there is still a lot of whining involved. This makes me wonder if she will ever crawl.

-She loves to stand holding onto something and has pulled herself to standing several times over the past two weeks. Last night she started letting go and balancing for a few seconds. It was so cute! She would let go and hold her hands out like she was trying to balance on a surf board and get excited and squeal. She was so proud of herself.

-She babbles a ton. She can say "lalalala," "mamama," "dadadada," "nananana," "vavava," and "bababa." She actually said "mamama" before "dadada" (:::fistpump:::). And now she says "mama" and "dada" to the right person. Greg commented the other day about how he never hears her say "mama" and I hear her say it all the time. And, when she really wants to nurse, she cries and says "muuuummmm!" or "mum mum!"

-She is obsessed with books. Especially turning and ripping pages. This makes reading to her almost impossible. And board books are not nearly as fun as regular books, (but we try to keep her away from regular books because we don't want to encourage page-ripping).

-She loves Cheerios, baby cereal (but only one particular brand of cereal), puffs, Mum Mums, and bananas. She'll eat only a few bites of most fruits and veggies, whether it be pureed or in finger-food format. I was really excited tonight because I gave her whole sweet peas for the first time and she ate like 10 of them. My CF doctor actually asked me why I lost more weight and I was like, "Because I have this 17 pound baby who doesn't like to eat anything other than grains and breastmilk :P"

-She loves to play ball, she holds her hands up to play pattycake, and she helps me dress her by holding her arms out when I put her shirt on her.

-She loves to go out in public, especially if there are kids around. She always slaps her hand and yells "Heeeeyyyy!" at people. So cute.

-I've been trying to teach her baby sign language, but she's decided the sign for "more" is slapping the high chair tray (as in, "more Cheerios").

That's all for now! I'll end this with a baby of Daddy and Baby:

And one from the Kite Festival this weekend:

Thursday, February 17, 2011

Awesome Gift!

Check out this onesie that I received from a fellow mom with CF. Her child wore it and she passed it on to me. (I'm not sure if she wants me to call her out on here). It made me all teary-eyed.

Wednesday, February 9, 2011

Two Sickies

Yesterday Lily and I both went to the doctor. I was freaking out because Lily looked like she was having trouble breathing, and I knew I was having trouble breathing. I gave Lily her first Xopenex treatment, and she responded really well to it (which is great, but it also makes me nervous that she may have asthma). However, I still wanted to get her checked by the doctor, considering her lungs had been rattly for a week. And I needed to get checked myself because I had a ton of junk in my lungs and was feeling short of breath. I was also still running a fever.

So, I went to the CF doctor and Greg took Lily to the pediatrician. My O2 sats were fine (99%) and my PFTs looked normal, so my doctor said it looks like I just have a really bad cold (he did say that he could hear stuff in my lungs). He told me to keep taking albuterol and vesting every four hours and he said I could try some Muxinex and Afrin. He also wrote me a prescription for Prednisone that I could fill "if I felt I needed it." He said I should call him back if I don't get better in a week, or if my sputum production (there's some gross CF-lingo for you) changes.

Lily's pediatrician said that her breathing still sounded gunky but she was not in distress. She wrote Lily a prescription for Pulmicort and told Greg to call back in two days. She said that Lily might have to take an antibiotic or oral steroid if she's still gunky.

Luckily we both seem to be feeling a little better today - we both are still have gunky coughs, but I no longer feel feverish and Lily is in a better mood. Fingers crossed this goes away soon because we are both so ready to get back to our routine!

Saturday, February 5, 2011

And....Now I'm Really Sick

Ugh. My lungs are all rattly, I was up half the night coughing, my head is completely blocked up, my throat hurts, and I feel feverish, dizzy, and weak. I haven't been this sick in a long, long time (It's probably been 10 years). My CF doctor called in an antibiotic (Augmentin) yesterday, so hopefully it will kick-in soon. But, right now I am in no shape to take care of my little peanut and I don't have a crystal ball to tell me when I will be feeling better. So, we are flying my mother-in-law in to help out this week. It sucks that we have to spend the $$$ on a last minute flight, but I knew this was eventually going to happen. I am just so grateful to have an awesome, retired mother-in-law!

Lillian is still sick too. Her lungs still sounds a little rattly and she cut another bottom tooth - so the poor babe has been teething AND sick. So, it's all-around fun times in our household right now :P

Wednesday, February 2, 2011

Lillian Has Bronchiolitis :(

My poor peanut! She developed a runny nose on Friday, spiked a fever on Saturday, and started coughing on Monday. The cough had not gotten better, her breathing sounded a bit rattly, and she was super fussy today, (she would scream unless I held her and walked around in circles), so I took her to the doctor. He diagnosed her with mild bronchiolitis.

He said to give her Tylenol or Motrin if she seemed to be in pain, push the fluids, use a cool-mist humidifier, and elevate the head of her bed, all of which are things we've already been doing. He also said we could take her into the shower with us and give her some mucinex. And he sent her home with...albuterol and hypertonic saline! The exact same two drugs I take everyday. So, not only are we both on Zegerid, now we might both be on the same breathing treatments :P The doctor said she only needed them if she was having trouble sleeping.

I feel sick too, so this sucks all around! I started coughing up junk yesterday and am really tired and achy today, so we may be hiring a mother's helper for the next two days. I called my CF doctor and he said to wait until Friday, and, if I'm not feeling better by then, he wants to call in an antibiotic.

Here's to hoping for a healthy household soon!

Tuesday, February 1, 2011

8 Months and Clinic Visit

Lillian turned 8 months old on Sunday! That seems so old to me. Here's a bit about what she is doing at 8 months:

-She's pushing herself up on her belly and scooting backwards and around in a circle. I'm not sure if she is going to crawl or just go straight to cruising. I try to give her at least 20 minutes of tummy time every day.

-She stands holding onto something and I can tell she is dying to move, but she doesn't yet get the concept of picking up her feet.

-She sits really well and loves to sit and play with her toys.

-She also loves the excersaucer, jumperoo, and activity table.

-She has advanced fine motor skills and can pick up a small object with the tips of her thumb and forefinger. She's been banging objects together for over a month, and she recently started throwing things, (not just dropping, but actually raising them and chucking them onto the sofa/bed), picking them up, throwing them back down, picking them up, and repeat. She actually started using the touchscreen on our ipod touch today and Greg and I were in shock.

-She loves to babble and can say "mamama," "dadada," "lalala," and "bababa." Right now she is obsessed with "dadada." Sometimes she jumbles it all together and it sounds like she is "talking." It is soooo cute. I freaking LOVE babbling!

-She is not a big eater. We introduced solids at 5-1/2 months and it took about a month before she would eat more than a teaspoon of anything. I've been cycling through all of the fruits, veggies, and cereals, and so far she only really eats Happy Bellies rice cereal, bananas, Mum Mums, and Gerber Puffs. I've tried things pureed and finger-food style. She'll take a few bites and then be done with it.

-She is sooo smiley and social. I love how easy it is to make her smile. And she loves other people. When we go out in public, I put her in a carrier facing-outward and she just kicks like crazy. Everyone tells me how cute she is ;) It's so fun. We also started Gymboree and she loves it. She slaps the floor and yells "ahhhhhh!" at the other babies :) (She always slaps things when she is happy - Greg and I call it "slappa slappa.")

-She usually sleeps 8:00-6:00ish and takes 1 to 1-1/2 hour naps at 9:30 and 2:00ish.

-She has one bottom tooth.

There's the run-down on Lillian. Here's a quick synopsis of my clinic visit:

-My FEV1 is holding steady at 112%

-My culture showed Staph at the last clinic visit (in November). This is a change from previous visits - I hadn't cultured anything in years.

-My doctor wanted to try Symbicort to see if it helps with the nighttime wheezing I've experienced. (I'm also supposed to get a endoscopy of my upper GI tract to see if reflux may be causing the wheezing, I just need to schedule it with my gastro).

-He was a little annoyed that I had lost weight, but I'm exactly where I was pre-baby (which means I still haven't lost the IF weight). I did try to lose enough weight to fit into my clothes, but I also lost a little more just because Lillian isn't eating much solid food and nurses all the time. I am always starving and eating like a freaking pig.

That's about it for now! I'm just excited I blogged twice in one week!

Friday, January 28, 2011

It's Been Four Months!

Holy Cow, it's been FOREVER since I have blogged! Things were crazy for a while and I didn't have time to do much of anything! For a few months, Lillian decided that napping wasn't her thing, and she would only take two 25-minute naps a day. Then she was really fussy from being tired. There were times I felt like I was going to lose my mind! But, now she's napping at least two hours a day AND sleeping 10 hours straight at night!

So, because this is a CF blog, I will start with a CF update. I had a clinic appointment in November and everything is still looking good: No change in PFTs (FEV1 was around 110%) and my cultures were still clear. I did catch a cold last month and developed a sinus infection that spread to a small Staph skin infection on the tip of my nose, but that's cleared up thanks to antibiotics.

Postpartum recovery has been a bit challenging, though. I am having a hard time recovering from childbirth and have to go to physical therapy every week and spend 10 minutes a day doing exercises to fix the problem.

I also developed plantar fasciitis in my right foot and have been making lots of trips to the podiatrist and have had to cut way back on cardio, which is driving me crazy! Back in November the podiatrist taped up my foot and I developed this horrible allergic rash that made me want to claw my skin off and required two weeks of prednisone just so the itching wouldn't drive me insane :/

I am still in shock that I didn't get sick from all the sleep deprivation I endured!

In Lillian news, she is doing GREAT. A little before seven months really was a turning point for us, as far as fussiness was concerned. Now she is soooooooo happy!!! It is so easy to make her smile and she loves to babble and yell and laugh. Greg and I are having so much fun with her.

She's a little peanut, with a height in the 20 percentile and a weight in the 30th percentile, but I'm not surprised considering Greg and I are fairly petite people. She has pretty advanced fine motor skills - she loves to sit and play with toys and is good at picking up small objects - but she is a bit behind with her gross motor skills. At the beginning of December, her doctor was concerned about the muscle tone in her arms. The doctor said that we had to do lots of tummy time for a month, and, if she wasn't considerably stronger, she needed to see a neurologist. Luckily, Lillian saw the doctor a few weeks ago, and the doctor was happy with her progress :)

So there is a quick and dirty update :) I promise I am going to try to blog more. Hopefully I will have some pictures in my next post!

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