Go away sickness update

We found out yesterday morning that Ethan tested positive for RSV from the nose swab they took in the ER on Friday night. We were obviously not happy to hear that and also knowing that Lila most likely had and has RSV as well.

I'm now coming down with it too. It appears to hit hardest on Days 4 and 5. My mother in law has it now and she's on Day 4 and she's miserable. I started feeling off, runny nose and slight cough last night. I feel fine for the most part but I know it's coming.

There's really no treatment for RSV, except if it effects you in a way where you need nebulizers, albuterol, etc to help you breathe. Ethan responded well to the extra albuterol and 4 treatments a day and once he got over the Day 5 hump he gradually got better. We'll be keeping him out of school for the rest of the week so the RSV doesn't just keep running around the school. Evidently you can get it over and over again.

As of now, Lila is on the mend as well. She still has a wet cough and a runny nose, but she's much better. She has what I would call a regular cold now and it's Day 11 for her and Day 9 for Ethan. Ethan still has a wet cough, runny nose and will continue on 4 treatments a day until the cough is completely gone.

Ken has pretty much been sick since the first of the year. He thinks he's gotten sick 3x with different colds and now feel nauseous at work today.

Sickness, be gone already!

Go away sickness!

While I was away on my girls weekend on Martin Luther King, Jr. weekend, Ken sent me a message on Saturday saying that Lila had woken up that morning covered in vomit from coughing. She didn't really have a fever so we weren't worried. We figured she had what Ken had earlier in the week.

Monday morning Ethan woke up with it as well. When I got home later in the afternoon I took their temps and they were at almost 100 so nothing to really worry about. We gave them Benadryl and Motrin and put them to bed

By Tuesday, Lila didn't feel too warm but I took her temp anyways and it was around 100.5. Ethan still seemed fine just a bad cough and low grade fever. Lila ended up throwing up a bit from getting upset and from a coughing fit.

On Wednesday both kids threw up from gagging while coughing or at least that's what we thought. Lila had a fever of 102 so we treated it with Motrin and she just cuddled with Grammy and me all day. I took the day off to be with the kids.

By Thursday Lila's fever came back at around 101. I had planned on taking her to the doctor that afternoon but she perked up around lunch time so I put it off.

On Friday we kept Ethan out of school for the 2nd day. Both kids woke up continuing to have a nasty cough. Ethan's cough kept him coughing and waking him up because it was so bad. Lila seemed to sleep okay at night. Ethan ran around like normal until about 2pm. At 2pm he laid down on the couch and immediately zonked out. He woke up a bit later and asked me where Grammy was, got upset, then promptly fell back to sleep. He hardly ever just falls asleep like that or even anywhere but his bed or ours.

By 3pm he really needed a treatment and I could hear him wheezing. His respirations were high and he kept sucking in his belly to breathe. I called Kaiser's advice line and talked with a nurse to see if we should bring him into the ER or wait for an after hours clinic appointment on Saturday.

After speaking with the advice nurse for about 20-30 minutes, counting his respirations 3x we determined that the oncall doctor, the nurse and myself didn't feel comfortable waiting for the morning.

So we headed to the ER. He coughed and wheezed all the way to the hospital and fell asleep almost immediately. At this point he'd pretty much been asleep since 2pm only waking up to take do his treatment at 4pm.

At the ER they took his temp in his armpit at 99.9 and his oxygen level was between 90 and 93%. They put us into a room. The doctor came in about 15 minutes later and examined him saying he felt warmer than 99.9 so she ordered a rectal temp. She looked at his ears and said that he definitely had one ear infection, if not two.

30 minutes later the nurse came in and gave him Tylenol and an albuterol nebulizer treatment. He perked up from the albuterol. Before this he had been laying on the gurney asleep or half asleep breathing hard. They then came in to take his temp which I thought was odd since they had given him Tylenol just 30-40 minutes earlier. Seemed kinda backwards to me. Even still his temp was 99.8. So my guess is he was really around 101 when we came in.

After this we were sent to xray to rule out pseumonia. 15 minutes later the doctor had looked at the xray and talked with Ethan's pulmonologist and they had decided that because his xray was clear that we should be prescribed a steroid for the wheeze and antibiotics for his ear infection.

After our 3 1/2 hour stay at the ER and waiting for Ethan's prescriptions we headed to McDonald's to pick up dinner and got home about 1130.

We ate, went to bed and were up at 2am to give Ethan an hour long treatment which helped but didn't change much. Ethan was wide awake at 7am (so much for sleeping in). I went to pick up Lila from my parents house about 9am and Ken laid down with Ethan for 90 minutes, got him up for a treatment.

By noon he was still refusing to eat and was really tired again so he laid down with me for a three hour nap!!! By the time he woke up for his afternoon treatment he had slept 4.5 hours out of the 8.5 hours he'd been awake and spent 2 hours of the time awake doing treatments.

The good news was that after that nap he started moving around and playing again. Since yesterday his appetite still isn't the greatest but he's not laying around either.

We had an interesting time attempting to get the liquid steroid down him. We mixed it with apple juice, then orange juice, then sugar this morning. Each time he either refused or threw it up. Thankfully he doesn't appear to really need it. We're still trying to give it to him but I think the wheezing has subsided quite a bit or even gone away altogether.

Since yesterday Lila has been whiny and clings to me. She doesn't really want daddy, just mommy. I think I'll need to take her in tomorrow to see if she has an ear infection. Until then there will be a lot of mommy/Lila time. Thankfully she's playing with Ethan now and giving me a rest. I have managed not to catch this horrible cold or flu. I feel a little weird today with drainage at the back of my throat, but otherwise fine. The test is still out as far as whether Ethan's got RSV, influenza or just a nasty virus. We should know today or tomorrow which one it is.

So that's what's been going on with us over the last week. Sorry for the long post. I'm hoping to look back on this posts after some time has passed. It's long so I can remember what happened later.

Big boy

Right now I'm sitting at my desk watching my big boy do his 30th TOBI nebulizer while he watching Sesame Street for the billionth time. He's been on TOBI for 2 weeks so far. We have 10 more weeks to go. It seems like a long time but we'll get through it. He has about 140 more TOBI treatments before we're finished in June. All I can say is my kid is fighter. He's strong willed which I think is a great trait to have when you are looking at a life where you're going to need to fight something as horrible as CF.

He's such a good little boy! For the most part he doesn't complain about the treatments. Every once and a while we'll find him running away from the couch, where we do treatments, but most of the time he willingly gets up on the couch for his treatments. I'm so proud of him.

We finished the oral antibiotic Cipro last night. We were happy because about halfway through he started having a horrible diaper rash. It was nothing Desitin couldn't cure :)

We are hanging in there as a family. It's been a struggle and I know it will continue to be a struggle but we've all come together. I hope that my friends and family are more aware of what Cystic Fibrosis is and how serious it can be. It's been scary, but we are optimistic and can't wait for the day that we know that we've kicked Pseudomonas to the curb!

On that day Ethan will get almost an hour and half of his day back. He'll have a little freedom from nebulizers and extra vest treatments. I can't wait! June here we come.

Thank you for your prayers and words of encouragement. They help more than you could know.

Overwhelmed

Life has been very overwhelming lately. I'm stuck in an endless cycle of vest treatments and nebulizer treatments. We spend a little over an hour in the morning, 20 minutes at lunch and another 45 minutes before dinner time doing treatments. For 2 1/2 hour a day we dedicate ourselves to machines hoping and praying that they will do the job.

That's just the machines. There's still the antibiotic 2x a day, enzymes (10 a day), vitamins (3 different kinds) and getting him to eat more than just a few bites of something. Top that off with the diaper rash from hell because of his antibiotic and you get one crazed mom.

Last night as I was trying to get to sleep for two hours (even after taking 2 Benadryl) my mind raced and I couldn't stop thinking about CF. There's a song we're using in our Great Strides video this year that kept playing over and over again in my head. I kept thinking about what's ahead for us. It scared me. I don't know what's ahead. Even when we do get rid of the pseudomonas, when will it come back and will we be as lucky as we were this time with finding it so early. I thought about how I would handle life if something was to happen to Ethan. I don't think I could.

When you're the mom of a child with a chronic illness you try to live in the moment and not think about the future too much. There are too many unknowns. We hope for the best and hope it all works out.

I think the pseudomonas is what has pushed me over the edge. This isn't a quick fix. It will takes months to get rid of it and even then it may still linger. We will always have to fight. It's unfair.

I feel like this is unfair to Ethan. He sits doing treatments for hours a day when he should be running and playing. It's unfair that when we go to the playground or the mall I even have to think about how many germs are on everything. It's unfair that this morning I had to cuddle him for 10 minutes longer because he feels horrible, before he would put his TOBI mask on to do his treatments. I want him to have a normal life and he won't. We can try but this is his reality until there's a cure for CF.

Sorry to be such a downer today but that's life for me right now. I'm sure in a few days I'll be more optimistic and upbeat, but for now life sucks. CF sucks!!!

Pseudomonas

Ethan's culture from last week's clinic came in yesterday and it showed that he had grown a bacteria called Pseudomonas Aeruginosa. This is one of the bacterias that is especially harmful in Cystic Fibrosis patients lungs. We've been hoping and praying that he wouldn't get it for a long time. It's inevitable that he was going to get it eventually.

As soon as I saw the result on the Kaiser website I emailed Ethan's pulmonologist to ask her if it was the bad one then I called one of my friends who has a son with CF to ask her opinion. She couldn't remember which pseudomonas was the bad one either. Luckily after a call to the pediatric pulmonary nurse, Ken got her on the phone and just as she was talking to him our pulmonologist came down the hall to tell her to call us. We are lucky that our team is so aggressive in treatments. This is why we have cultures and appointments every 3 months so we can catch bacteria before it continues to grow.

Pseudomonas Aeruginosa is found all around us. It's in soil and even water. It's very hard to not come in contact with. In fact, everyone by the time they are an adult have pseudomonas in their bodies. It effects patients with CF more severely because of all the sticky mucus buildup in their lungs. It's hard to get rid of.

Ethan was started on a new nebulizer called TOBI for the next 90 days and an antibiotic called Cipro for the next 14 days. Unfortunately, the Cipro can only be found quickly in pill form so we have to crush it and mix it into his food. He's onto us. We've got to figure out a new way to get it in him or hope we can get our hands on some of the liquid soon.

This all is very stressful. We're worried about Ethan and how we're going to get rid of this bacteria. I hated putting him to bed last night knowing that the bacteria was just sitting in his lungs. In 6 weeks we'll go back for another culture and hopefully it will come back negative. If it's positive Ethan will have another round of antibiotics. Either way we'll be doing TOBI for 90 days to ensure that it's gone. After the 3 months are over, Ethan will go in for a brochoscope to check to see if the pseudomonas is completely gone in all of his lungs. If it's not he'll be hospitalized for IV antibiotics. The pulmonology team is very optimistic that they will eradicate it from his body. I just hope it's sooner than later.

Unfortunately, Ethan can get pseudomonas over and over again throughout his lifetime. It's when it makes its home in his lungs that he will have problems. We're hoping and praying that the next 3 months will go smoothly and that we will beat pseudomonas!!!

Thanks for all your prayers! We can feel them.

This is a photo of Ethan doing TOBI for the first time. It was also his first time using a mask. He fought us for 20 minutes kicking and screaming but in the end held his own nebulizer to finish the treatment. Today we had success with both of his morning nebulizers. He barely fought us. I think we're headed in the right direction.

Just one more...

A topic that often comes up in our house is whether we should have another baby. With Ethan having Cystic Fibrosis and the odds being that another baby would have a one in four chance of having it as well we are cautious.

It's all how you look at it. We could say there's a 25% chance that our next baby would have CF. But, you could also look at it like there's a 75% chance that we would have a healthy baby with no CF. The baby would still have a 2 in 4 chance of being a carrier and a 1 in 4 chance of having nothing.

Is that a risk worth taking? To us, it is. That might sound awful to some people. Why would anyone want there to be a risk that their child would be born with a chronic illness?

Here's how we look at it. We were blessed to have Ethan even with his CF. I wouldn't trade him for a healthy child. The CF does not define who he is. He is an amazing child who loves to sing, dance, play and most of all talk. We love him no matter what and his life is just as precious as any other child's.

We also really want to give him a sibling. I grew up with a sister and although we weren't that close until high school & college she is one of my best friends today. I want Ethan to know what it's like to have someone who gets him because he or she was there and grew up beside him. If our next child did have CF, they would have each other for support and even if our next child didn't have CF, they still would have each other.

I realize that our decision will be met with much criticism. All I ask is that if you don't agree with us that you keep your words to yourself. We have put a lot of thought and time into our decision. It's been a very difficult decision to make and we worry about the outcome all the time. We pray for a healthy baby but know that God might very well give us another baby with CF and if that's His plan then we're at peace with that.

We don't intend to have any more children after the second. We feel that that's the right decision for our family.

We value your support as our friends and family and hope that you will embrace our family and our decision.

17 months!!!

Ethan is now 17 months old! I can't believe it. He's now been walking for about 2 months and getting closer to running. He talks ALL the time. He loves to sing "Baa, Baa, Black Sheep" every chance he gets. He also loves the ABC song, Itsy Bitsy Spider & Elmo's song. Elmo's song is just a little bit more annoying but he loves it. Ethan reads aloud to himself and turns the pages as if he's really reading. He also has started saying "Bye bye" instead of "Dye Dye". He says "Moo" and barks when he sees dogs.

Ethan now can say about 15-20 words depending on who you're talking to. If I didn't hear it, it didn't happen in my book. I keep a calendar on the wall in the kitchen to track his health, but also milestones.

In the last month he has given up bottles completely. We went from 2 bottles and then to 1 in just a few days. He drinks out of a straw cup and does very well. We waited a few more months than we originally wanted because he wasn't drinking enough from the straw cup. Now he drinks about 16-20oz a day!!!

We went in for a weight check a couple weeks ago and Ethan weighed 23 lbs 11 oz. He was down 4 oz from his last weight check a month prior. This was the first time since he was brand new that he'd lost weight. We were discouraged. We've been trying to "fatten him up" for the past month or so. His growth has slowed down. He basically hasn't gained any weight since he turned 1. We're being told to get more higher fat foods down him and increase his calories in whatever ways we can. Meanwhile we're dealing with a picky eater. It's all very frustrating.

We go in for his 18 month checkup on August 2nd so we'll see then if he's managed to gain weight back. Gosh, I hope he doesn't lose anymore.

Ethan took his very 1st camping trip with Grammy & Grandpa (A.K.A. Ken's parents) to Bodega Bay over the weekend. He was gone for 48 hours without us for the first time. He had a blast and probably didn't miss us as much as we missed him. Well as much as I missed him at least ;) We enjoyed a nice mini 24 hour vacation there ourselves when we came to pick him up.

Ethan is doing so many new things that I forget to write all of them down. He's growing too fast! I wish he'd slow down.

CF Great Strides Walk

We didn't quite make it to our $5,000 goal, but we got pretty close with $4255. Ken was the #7 top walker and Team Ethan ranked #4 out of top teams!!! We are very proud of how much support our team got from our family and friends.
This year the new family I'm working for all came to walk, my neighbor and her family, my parents, my college friend and her friend, my niece, my brother in law and Ken's parents. I hope I didn't forget anyone. The walk was 3 miles to places around the State Capitol and took a little over an hour.



Thanks again to everyone who participated and to everyone who donated. The Sacramento Chapter raised over $144,000 this year!

A year ago today...

...we were being released from the hospital after a 5 day stay. Ethan had brochialitis. It was Mother's Day and we spent most of the day in the hospital. Thankfully we were released about 2pm and able to spent the afternoon with my family. What a memory for my 1st Mother's Day.
Today we are thankful that we have made it a year without any hospitalizations!

Clinic Update

On April 6th, Ethan and I headed to our clinic appointment with Ken's mom, Grammy, as well. Ethan weighed 22 lbs 7oz, which was less than he had weighed at his 1 year appointment 6 weeks earlier. He was at 23 lbs 4 oz then. He had been sick for the last week, but a pound is a lot. In the pulmonology department they don't like him to go below the 50th percentile for ratio of weight to height. He fell just below because of the weight loss.
He had sputum test and everything came out normal. It even showed that something that he had been growing in his lungs had completely gone away. Must have been the antibiotics over Christmastime that did it.
We met with Ethan's dietician and she told us to start trying to fatten him up again. We were given a list of things to add to his food. For example, butter, jello, Nutella, mayonaise, etc. He has to gain back an entire pound and we're hoping he does it before the beginning of May when he has a weight check.
His pulmonologist put him on an antibiotic for 10 days because of his wet cough. His lungs were clear, his ears were clear, and there were no other problems.
We are set to go back into clinic in June maybe July if his weight goes up and he doesn't have any other problems.
Right now, we are in week 3 of sickness. He has had the same wet cough since March 31st. We are all ready to be done with the nebulizers that we're doing 3x a day, plus his vest and an albuterol puffer 3x a day as well. Ken and I try to just do what has to be done, but it's hard when it goes on and on. We know that eventually this will be an all the time reality. Most likely Ethan will be on more meds and nebulizers as he grows which will take up more time. I'm mad that we have to do them in the first place. Please just let the poor guy catch a break and we well again.
Throughout all of this we've been dealing with pink eye. Ethan got it on March 31st and a week later I caught it. He was treated and while on his antibiotic for his wet cough it went away. As soon as the antibiotics were done on Saturday it came back. So now he's on a much stronger eye drop. I'm ready for April to be over. Bring on May!

Sickness go away!

Ethan's sick with his 3rd cold for the season. We have been lucky that it's only been 3x since October. We always worry that a cold could turn into something worse, but also try to remain hopeful that it won't.

Right now, he has a wet cough, congestion and a runny nose. He's not drinking as much as he should and his eating is okay, but not great. I am more concerned than I was yesterday, but still trying to take it a day at a time. I need to make a call tomorrow to the pediatric pulmonary nurse to give her an update on him.

In the meantime, we have been told to do Hypersal 2x a day and Pulmozyme 1x a day through his nebulizer. We also are being told to do his vest 3-4x a day. It makes it difficult to do anything but just stay home, but we probably shouldn't go anywhere anyways. Ethan is grouchy and cries to held. Not typical of Ethan at all. He's usually fairly happy most of the time (unless you tell him no or take something away).

It's so sad to listen to him on the baby monitor coughing away and wincing right after. His throat must be hurting him. His voice is raspy.

Please God, let him get better.

Clinic Appointment Update

On Wednesday Ethan, my mother in law and I headed off to Roseville for our quarterly clinic appointment. I was so thankful to have help during our 2 hour appointment. Ethan was so squirmy during his Synagis appointment the day earlier that I couldn't even imagine how it would have gone if I hadn't had someone else there to hand him off to.

Ethan weighed in at 21 lbs 7 oz and is 28 inches long. His length to weight ratio is a little off because he's considered short for his weight. For a CF kid he is beyond what the doctors would expect and more. They have joked that maybe he's not pancreatic insufficient, which we know from testing that he is.

We met with his pulmonologist, Dr. Perez. Since Ethan had a wet cough last Friday we were doing some nebulizer treatments. We had him doing Albuterol and Hypertonic Saline. Both of those combined takes 40 minutes. After nebulizers we start his VEST treatment for 15 minutes. We did that three times a day.

Thankfully, our doctor stopped the Albuterol and Hypertonic Saline because Ethan's lungs were clear. They have decided to start Pulmozyme as a preventative nebulizer because he has already been sick twice this winter. We are all striving for a hospital free winter. The Pulmozyme only takes 15 minutes once a day and we'll continue his VEST for 15 minutes twice a day.

Ethan finally is big enough for an actual vest. We have had him in a wrap for the last 8 months. We are grateful for the new vest because he was starting to rip the velcro off the wrap during treatments. Here is the photo of his new vest:

We also were given a puffer for the Albuterol which will cut the time from 15 minutes to 3 minutes. I'll take pictures of that when we need it. For now, it will only be used if he is sick.

We are very thankful that his last sickness only lasted 4 or 5 days. He is back to normal now, being his happy self again.

We're sick!!!

About a week ago Ethan woke up around 10pm, which he rarely does, crying. He was fussy for about an hour and finally calmed down around 11pm. The next morning I noticed he was congested. Ugh, a cold! For the last week he has been sick. We've used a ton of Boogie Wipes, which I thought I'd never buy, but they work. Now we have been told by the Pulmonologist office to begin nebulizers and to add a vest treatment to the middle of the day. He is not weezing or having a hard time breathing. He is his normal cheery self and is eating like usual (a lot!). He's just sick!
On Thanksgiving day he started to have a wet cough so that's what made me think to call the nurse on Monday to see about starting nebs. We now are doing nebulizers 2x a day for a total of 45 minutes at a time and his vest treatments 3x a day for 15 minutes at a time. I realize that in the CF world spending 2 hours and 15 minutes a day doing treatments is nothing so I should be grateful. However, it still sucks! Ethan hates the nebs. He won't stay still for long enough and the only thing that really works is turning on Baby Mozart. He has to watch it over and over again because that's the only baby video we have. I'm looking into finding another show on Netflix streaming so I don't lose my mind watching Baby Einstein.
Luckily the nebulizer treatments will be over when his cold is gone. He's had it for 1 week now and the nurse says that most colds last 10-14 days. If it's not gone by then we'll most likely have to go in and be seen by one of the pulmonologists. I don't foresee that happening, but it could. For now, we're doing as the doctor orders.

Here we go again...

Today Ethan and I headed to Kaiser for his first Synagis shot of the season, well he had two shots of it because he's such a big boy. He weighed in at 21 lbs 1 oz!!! The nurse said he is not your typical CF baby. He's huge! She said that compared to when he was supposed to come in March for a shot, she expected him to be small, but was pleasantly surprised that he is doing so well. She mentioned something about how he might have mild CF. According to our doctors CF is a luck of the draw thing. The more bacterial infections you have the worse your lung function is. It's not about having a mild form of it. I tend to lean towards what our doctors say and not the nurses giving the shots.
Anyways, Ethan got his shot(s) and we got another lecture on where to allow Ethan to go. Here is my list and instructions:

KEEP YOUR BABY HOME (until the end of May)
*Avoid airline travel
*Avoid large holiday gatherings
*No daycare, no church nurseries, etc.
*No ear piercing or studio photos
*Avoid malls, shopping centers, movie theaters, etc
*Keep sick people away from your baby
*Keep your baby covered, in the stroller or car seat, with a blanket when you need to bring them to Kaiser or other public areas.

The nurse also told us we basically can't go to Thanksgiving unless we don't bring Ethan. Right, like we're going to do that. She makes a good point that children between the ages of 2 and 5 are germ magnets. My niece is two. How am I supposed to keep Ethan away from her until May? She loves him and he loves her. Ken and I are upset again by the drastic measures we are supposed to go to keep him healthy. It seems like an impossible thing to do or at least that's what the list leaves me feeling like. As I said in my prior post, we'll keep him out as much as we can but we can't live in a bubble.
Every four weeks we'll be doing this all over again through April...we'll see how that goes.

Living in a bubble

Yesterday I received a call from the nurse who gives the Synagis injections for RSV. We have to go every 28 days until April to help lower his chances of getting RSV this winter. She went on to tell us that we were to keep him out of grocery stores, restaurants, malls, and basically all public places for the winter. She also asked what I did for a living. When I told her I was going to be starting a new nanny position she told me "if you work with kids your son will get RSV". Nice, thanks for making me feel guilty for trying to put food on the table for my family. How the heck am I supposed to do that?
Our doctors told us back in March that we can't live in a bubble and who can stay inside all day long. We are "allowed" to go for walks.
I'm so frustrated. As if the pressure to keep him well wasn't enough now I have been made to feel guilty if I choose to take my kid in public. I want to protect him but when does living a normal life become important too? I want him to have a normal childhood not be shut up inside all the time. I wonder what I'll be expected to do when he wants to go to AWANA at church at 3 years old or preschool or being in Sunday School every Sunday. I want him to know God and be around people who will be his extended family. I want him to have friends. It's bad enough he can't interact with other kids who have CF. Now, he's expected to be alone too.
I just can't do it. We'll try our best to keep him out of those public places this winter, but I will not be forced to stay inside all day and not live our lives. I try to stay away from sick people, especially sick kids and I'll have to be very careful at work, change my clothes immediately before touching him and continually wash my hands at work to help keep from taking germs home to him. I would have to take these precautions even if I was working in an office. I will not be made to feel guilty.
I am his mother. I can make good decisions for him.

The job hunt continues...

Well, the job that I thought I had fell through. One day we were getting everything set up for me to start today and the next she chickened out. I was really angry on Friday when she emailed me to tell me she was hiring another nanny. The other nanny was cheaper than me and could give her the flexibility that she needed. We had talked on Thursday and I had assured her that I could give her flexibility, but I guess she didn't believe me. I think it came down to the money.
Oh well, no job, so the search continues. I don't care if it's a nanny position or an office job I just need a job by November 1st. I am on Paid Family Leave until the end of the month so for now we have enough money. We are anxious about using our savings to float us. We are lucky that we have savings to use, but we worry that it will take a long time to find a job and we'll eat through our savings in the process.
The good thing about this extra time is that I'm home with Ethan a little longer. I was having a very hard time thinking of leaving him and now that I'm home a bit longer I can enjoy being home for awhile longer. I guess I'm lucky that I've had 7 1/2 months at home with him and am still getting paid.
Ethan is almost 8 months old and weighs around 19 lbs. We go in to see the pulmonologist tomorrow for a weight check and for him to check to see how Ethan's doing overall. I think it will be a fairly routine appointment. Oh, and Ethan has gotten his 2nd tooth!

Cold & Flu Season

Not that anyone ever looks forward to Cold & Flu season, but we especially don't. We made it through the last one just barely with Ethan in the hospital twice, once with Brochialitis and once for a bad cold. We spent a total of 13 days in the hospital between March and May ending our stay on Mother's Day.
This year Ethan will have to get monthly Synagis shots between October and April to reduce his chances of getting RSV. I hate giving him shots so much mostly because I think it's so much for such a little body. In fact, that's why I space out his vaccination shots over a few weeks each time we go in. That's another story.
Anyways, the Synagis shots only reduces his chances by 55% so we still need to be careful. This summer we were less worried about germs because it seemed like more people were well. But, now that we're headed into the fall all the sickness is coming back.
We worry a lot about being back into the hospital and our biggest worry is the damage that can be done to Ethan's lungs if he gets a bacterial infection. Luckily, he has not had any bacterial infections. His lungs are perfect!
We went to have a weigh in on Friday and he weighed in at 18 lbs 11.5 oz. He's a big boy! He has more than doubled his birth weight which was 8 lbs 9 oz. We are still giving him enzymes to help him digest his food. He will always need the enzymes because he is pancreas insufficient meaning he can't digest his food on his own because his pancreas lacks digestive enzymes that should help him properly digest his food. Ethan's pulmonology team says that we're doing everything the right way and that we are a great example of how successful families can be if they stick to the program. We are very lucky that we found out about his Cystic Fibrosis so early so that we can help prevent damage on his lungs. Of course, we still worry about the future, but I think what gets us through the day is living day by day and moment by moment. I think this has forced me to live in the moment and enjoy Ethan for where he is and who he is.
We are doing very well. Ethan is healthy and a very happy baby. He smiles almost all the time and is very low key, just like his daddy. He loves to squeal and yell like a girl. It's funny sometimes and not so funny other times, like when we're in a restaurant.
Despite being worried about Cold and Flu season, all we can do is hope and pray that he will stay as healthy as he can, try to help prevent him from getting sick and continue doing his treatments.

Update on our Family

We decided it might be a good idea to send all of you an update on our family. I realized that we were only updating when we needed prayer and not when we were doing well.





Ethan is now 6 months old and a very happy baby. His smile is infectious. As of 2 weeks ago he weighed 17 lbs 7 oz and was 26 inches long. His weight gain is great for a baby that doesn't have CF, but for a baby with it it's amazing! The pulmonologist has been very happy with his weight gain. He is not a failure to thrive kid like many of CF babies can be. It's all thanks to his awesome doctors, the therapies, and God's grace. The Creon, or enzymes, that we give him at every meal have helped his digestive system because he is pancreatic insufficient. He will always need Creon.




We were pleased to hear after getting blood work back that Ethan had fought off a cold on his own. The test came back showing that Ethan's white blood cell count was slightly elevated which meant he had fought something off in the last month. We couldn't believe we'd missed it. He just had a cough and we didn't think it was a cold.




Recently, I have struggled with the "burden" that the therapies can be. I will always do whatever Ethan needs to keep him healthy, but sometimes I feel very overwhelmed. He has chest therapy, his VEST, 2x a day for 15 minutes, as of four days ago it was 20 minutes 2x a day. Currently, thankfully, he's not on nebulizers which are even more time consuming. I probably sound like a big complainer, but I'm trying to be honest about how CF effects us on a daily basis. For the most part, I forget he even has CF most days. Even with the therapies and keeping track of what he eats and how much, I still forget.




Ethan is such a great baby. He puts himself to sleep, takes long naps, sits up (this is new!), loves to sleep on his side, smiles at almost everyone he meets, loves playing with his family and absolutely loves to make screeching noises. Ken likes to make screeching noises right back at him and make a contest of it. Our poor neighbors can probably hear it all. We love being his parents and are thankful for everyday that he is here. That being said, I want everyone to know that I realize that CF is unpredictable and he may be one of those people who eventually needs a lung transplant, but most likely he won't. With the preventative care and hope for a cure in the near future, we believe that he will grow up to go to college, get married and even have kids if he chooses to. We're excited, but also know that we don't know for sure what the future holds.

Thank you all for praying for our family when things are bad, but also thank you for continuing to pray when it's good too. We are doing very well.



Erin, Ken & Ethan

Weight Update

We went to clinic yesterday and found out that Ethan weighs 17 lbs 4 oz and is 25 inches long. He is in the 58th percentile for weight and the 91 percentile for weight to height. A couple months ago the dietician had us start concentrating Ethan's formula. We started using less water and more formula in hopes that he would gain weight and be able to sustain his current weight. Here we are two months later and he's huge! In fact, he is so big that they may have to stop concentrating his formula to be sure that he doesn't gain too much, too fast.
We also found out that his lungs are clear, which we figured since he hasn't been sick lately. We are so thankful that he is continuing to stay healthy. Hopefully this winter will be smooth sailing and he will stay out of the hospital.

Licking His Food

I wish that I had a picture of this, but Ethan doesn't really like to open his mouth to eat his food. He just likes to lick it. The pediatrician says that it doesn't mean he's not ready for solids. I guess he's just checking out the food. We'll keep trying and hopefully by mid August we'll have the food thing down.
He's tried carrots, peas, sweet potatoes, avocados, pears, apples & bananas. He's also tried barley cereal, rice cereal, oatmeal and multi-grain cereal. He hates the rice cereal and really who can blame the poor kid? It tastes like cardboard. I tried it. Bleh!
It's funny lately to hear Ken as he feeds Ethan his dinner. "Ethan, no!" as he bats away the food and it flies onto the highchair or floor. We've recently tried giving him a spoon so he will be distracted and open his mouth for food. I think he wants the food, he just doesn't get that he has to open his mouth to get it. He watches us eat and seems very interested and once the food is in his mouth he can push it all the way back without gagging. It's a mystery! We'll see how long this licking goes on.
The pulmonologist told us at his last visit that Ethan is not a failure to thrive kid. He was 15 1/2 lbs and 25 inches long at our visit 3 weeks ago and I'm sure he's 16 lbs by now. Kids with CF have digestive problems and because of the enzymes we give him before every meal he is gaining weight beautifully. I hope he can keep this up once he gets the hang of solid foods.