Hips finally NORMAL

We went for a follow up of Kelsie's hips today and the xrays looked really good! The ball of the hip joint looked symmetrical on both sides and the socket was curved on both sides like it is supposed to be! (At her 6 week ultrasound, they also told us her hips were normal but that unfortunately turned out to be false good news because at 7 months old they again discovered that there was some asymmetry in the development of the hip joints). At her last follow up, he said she needed to wear the hip brace at night until she was 2 (which was like another 7 months at that point I think). Well I will admit, she only worse it for another month or two. Once we got the PT vest, we got out of the habit of getting her up at night to do PT, which was also when we always put her brace on. So night after night, we forgot to put her brace on and eventually just stopped trying to do it all together. And now, I guess it shows that her hips were able to develop correctly on their own anyway! (We didn't tell the doctor that but it sure made me feel better.) I know I would have felt bad if they didn't look healed up at this point, but in the grand scheme of what is going on in our lives, her hips just weren't as high on my list of worries. I knew from the last visit that they were almost where they needed to be in terms of development and shouldn't give her any problems until "her 50s", he said. So I wasn't too concerned about making her wear that restricting brace every night. And now I feel good that I made the right call! He still wants to do another hip xray in 1 year. But he was very positive in what he saw today! So glad I can cross this off my list of things to think about! :) I needed that bit of good news today.

Better but worse

Kelsie had the follow up xray of her belly on Monday and there was actually a lot of improvement. There still appeared to be some stool in her colon but significantly less solid contents than before, much to our surprise! Her doctor wanted us to continue giving her 4caps of Miralax for 3 more days then wean down very slowly. Yesterday, she said we could drop it down to 3 caps per day for another 2-3 days then 2 caps for a few days and eventually get down to a maintenance which would give her 2 soft stools per day. We're not sure where that is yet, so we will just keep going down slowly until we get there. And hopefully, we will be able to keep her on a regular pattern at that dose to prevent this from happening again.

Her appetite had improved and I thought she was getting much better, then she woke up vomiting last night! I was like, really!? As if we haven't had enough on our plate the past 2 weeks! She vomited 3x within an hour and a half! So we were up and down cleaning up vomit and now questioning, is this related to the constipation or is this something new? She has been ok today, just whiny from not getting much sleep last night I think and she hasn't wanted much to eat or drink much besides milk. She did have 1/2 can of chicken noodle soup (undiluted) which gave her a lot of extra salt, so that was good. So I guess we will see how the rest of this plays out. I am just ready for a break!!

I have a terrible cold on top of everything and have SO much work to do before next week! Work has been so busy, I have a ridiculous number of charts to complete before next week in time for our new charting program (and its so hard to find time to do that when I am home), we are getting hardwood floors and have to pack up half of our house within the next 2 weeks, I have to finish an online driving school (as repercussion for my speeding ticket), Kelsie has had 3 long visits at the hospital in the past week, I have been taking Kelsie to the bathroom and cleaning up poop non-stop for a week, I have had to take extra time to email and update her doctor on her GI issues, and now the vomiting.  And I am supposed to work tonight until midnight!! And its Easter and we have family get togethers planned this weekend. I just feel miserable myself from this cold and I am so exhausted and overwhelmed! Things have got to start getting better!

Easter egg DISASTER

I thought I would try dying Easter eggs with Kelsie this year. Well, she quickly reminded me that she is too busy, curious and independent to handle such an activity at the grand ol age of 2! The eggs were too tempting not to squish and the dye was too much fun to splash. So we ended up with a huge mess but she had fun anyway!

Another clean out

Kelsie is still having issues with constipation! Some kids with CF just have a lot of problems with this and I guess she is one of them. We just did a home clean out a few weeks ago and things were seemingly better. However, she lost all of her appetite and started refusing mostly everything we offered her. So after a week of this, I contacted her doctor to let her know. She said she thought she was likely just acting like a toddler and thought we could just give it some more time. She was having consistently large loose stools at this point so I even thought maybe her stomach was upset and that the Miralax was making the diarrhea worse so I skipped one day of giving her Miralax and the next day, her stool was hard again. This wouldn't be such a big deal, except that she wasn't eating clueing us in on a bigger problem. After seeing this big change in her stools, I contacted the doctor again and told her that we are ready to see a GI specialist about how to get this under better control. She agreed that seeing GI was a good idea and also said she wanted to bring her in for an abdominal xray.

So we went on Friday morning, had the xray and also had a visit with her doctor. The xray showed that she was full of poop so she gave us the option of doing a more agressive cleanout at home or be admitted for an official cleanout. I was actually tempted to just do it in the hospital this time because this has just been a recurrent problem for too long. It seems that we have never actually been able to clean her system out despite doing these aggressive home clean outs before. But this time she suggested giving her 6-8 caps of Miralax (her daily dose is 1/2-1 cap) and in the past we have done 4 caps of Miralax for the home cleanouts. We are also going to a follow up xray tomorrow to see how much progress has been made.

So far, we haven't had much success. My poor baby has had to drink so much fluid with that Miralax in it, she is not eating much of anything, and she is definitely having some discomfort. Getting her to drink has even been a struggle. Her belly is really big and is now getting tight as well but for as much that has gone in, there sure hasn't been much to come out, so I'm not too surprised. We have been taking her to the potty frequently and she has been using it more than her diaper which has been nice.

For a child that has to go through so much, she sure doesn't let it phase her. She is the most playful little thing. She has been acting super happy, hasn't been irritable whatsoever, but she does tell me that it "hurts" and when I ask where she points to her belly and her bottom.

I'm really hoping and praying she doesn't have to stay in the hospital but I'm kind of expecting it. Her doctor said we would eventually have to do this in the hospital if a home cleanout did not work. And I don't think there is any way we are going to see any big change on the xray tomorrow. But we will wait and see.

Remembering the call

On this day 2 years ago, I received a phone call from Kelsie's pediatrician. I still remember exactly where I was sitting, what I was doing, and how my heart sunk to the bottom of my feet when I heard her say those words: Cystic Fibrosis. I was sitting here on my sofa just holding and adoring my precious newborn baby who had just finished nursing and was sleeping in my arms. My phone buzzed and I thought it was strange that her doctors office would be calling but didn't think too much of it. I answered and it was her pediatrician, an extremely sweet and caring young female doctor just out of residency. She asked if it was a good time to talk and then asked if there was anyone here with me. I told her no, I was alone. I was starting to sense some concern.

She said she had received Kelsie's newborn screening results and that it had detected an abnormality in the testing for Cystic Fibrosis. She told me that further DNA testing was done that confirmed 2 mutations of the Delta F508 gene of Cystic Fibrosis. WHAT!? That's what I was thinking. It was just a very surreal moment, like it couldn't be true. The phone call was over in probably less than a minute or two. She asked if I had any questions and I just remember saying through the tears that had already started forming, "I think I already know too much." She said "I know, I'm sorry" and told me she would be getting us set up with a pulmonologist right away. I don't even know how to describe what that moment was like. Here I was holding my baby who, despite her hip brace, looked completely perfect and healthy, I had a near perfect pregnancy and just had no suspicions anything would be wrong! I was so careful during my entire pregnancy to do everything right in an attempt to keep my baby as healthy as she could possibly be. But then this. How could it be true!?!? Why did this have to happen to my baby?  To us?

I immediately dialed Nathan at work. The rest is just a blur. He answered and I don't even remember what I said. I just know he was trying to calm me down and understand what I was saying but within minutes had packed up his things and was in his car on the way home. He started crying too and kept me on the phone the whole way. We were in utter shock. We didn't know what to do. We felt so helpless, so sad, so in search of answers, and so desperate for someone to tell us it was all a misunderstanding. We cried, we prayed, we made phone calls, and sent emails asking for others to pray. We didn't want it to be true. We clung to one tiny glimmer of hope...the sweat test which is the gold standard for diagnosing CF. Looking back now, its clear it was just a legality because the DNA testing had already been done and revealed TWO copies of the most common form of the CF mutations, so there was no way that sweat test was going to change anything. Still, we held on for another week, hoping and praying.

We went in for her first CF appointment one week later. She was just 3 weeks old. We were there from about 10am until 5:30pm. The sweat test was first and before we left that day, we had confirmation that is was very positive so there was no denying it at that point. After the sweat test, we sat it one clinic room while person after person came in, introduced themselves, and began to educate us about Cystic Fibrosis. It was very clear this was the beginning of a very long and complex road ahead of us.

I remember leaving that day feeling very overwhelmed and exhausted, mentally and physically. My emotions were a roller coaster for sure. At times I felt angry, other times I felt in denial and unwilling to accept it. I would have moments of strength feeling at peace with what lied ahead but then break down all over again from the weight of what all this meant for us, for Kelsie, and for our future. They sent us home that day with a number of medicines to give among other things. And I just remember trying to give her those enzymes for the first time. Not knowing what to do with granules mixed with applesauce in her mouth, she spit it out like any 3 week old would do. It was so difficult figuring out how to do that. She was crying, hungry, I just wanted to nurse her, but instead I had to force her to take this unusual substance and it felt like I was torturing her. I thought for sure she was going to end up hating me or our bond would be broken because of all the things I had to do to her. Irrational, I know, but I was just so devastated. I threw the medicines down and just lost it. Slowly, but surely, it got easier.

Through it all, my faith in God was the one thing that gave me comfort. My faith is at the core of who I am and through it, I see through a different lens. I believe it allows me to view things on a much larger scale; so, seeing this as a part of God's design gave me hope and through Him, I found strength beyond what I could have withstood on my own. I found peace in knowing that He had His hand on the situation and would be with us through it all. At that time, I knew that handing this over to Him would give me the most freedom and comfort and I still believe that to be true. When my faith starts to waver, my anxiety starts to rise and my fear of the future begins to wear on me once more. But when I trust in Him and really really have faith that He can do anything and WILL take care of her, I feel at peace again.

It has now been 2 years since my little girl was diagnosed with CF. She has been so unbelievably healthy and I couldn't be more grateful for that. When we found out she had CF, I had no idea what her first 2 years would hold and while I feared the worst, I was still determined to have them go exactly as they have. A life full of joy and normal baby and toddler fun!

Still thinking back on this diagnosis brings tears to my eyes. I still feel sad that she has to go through this and will have to battle this disease looming overhead every day of her life. I still feel tired from all that I have to do to take care of her every day and I dread the conversations that lie ahead as I explain to her what this disease is and what it means for her future. But this is our life. Every day, we do the best we can to make sure she will remain as healthy as she can be for as long as possible. And every day, I try to keep the balance. I don't ever want this disease to hold Kelsie back. But at the same time, I still have to be careful to try to prevent her from getting sick. I was so NOT a germaphobe before this but have taught myself to be more meticulous about those kind of things. Wiping down every chair and surface in the doctor's office is not something I ever would have done, but I do it now because I want to keep Kelsie healthy as long as I can. But we also take chances sometimes. We go to play groups with other kids and she stays in the nursery at church. She will go to public school and football games and birthday parties and sleepovers. She will play whatever sport she wants or take music or horseback riding or whatever it is she decides to do. But I will teach her diligence and perseverance and the importance of taking care of herself. And I will pray that God will give me the answers to those difficult questions when they arise. I know this has changed me but I also believe it is exactly where I am supposed to be.  I am so thrilled and thankful for how well Kelsie has done so far and I give God all the glory. There have been a few bumps here and there and I know there will be more setbacks along the way but I am learning not to worry too much about those until we get there. And when we do, I know God will give me what I need to push through once more.


These pictures were taken just before I got the phone call from her doctor. My sister had just left about an hour before.

If you want to learn more about Cystic Fibrosis, you can do so here!

Story time

I treasure these moments.

2 year check up

Kelsie had her 2 year check up today! She got quite the attention from the office staff. Everyone was going on and on about how adorable she was (I happen to agree :)) and she was definitely showing off her little personality. She was laughing and talking and being her silly self while the doctor was in there. And when it was time for her to examine her, she just stood there like a big girl without a fuss. She weighed 29lbs 4oz. And there was nothing new to discuss. She's doing GREAT! Her growth, development, health... everything is fantastic and I give God all the glory. Thinking back to 2 years ago when she was diagnosed with CF, I never would have imagined she would have been this healthy at this point. But she has just done so well. And I pray everyday that it stays this way!

Before she went to the doctor, she had a fun little bath so I have to include this picture I snapped of her being a silly little fishy. :)

And we went grocery shopping afterwards. I let her push her own little cart for the first time and that was quite an adventure. She is a VERY busy little person and loved having this independence. She was also waving at people saying "Hi!" and "excuse me" which I taught her to say to fellow shoppers as we were shopping. She picked up on that one really quickly. She took it upon herself to throw any and everything in her cary. First...a piece of kale. A 5lb bag of potatoes. Some croutons. A slab of pork ribs. Potato chips. Cans of peas and pinto beans. A bottle of ketchup. Several taco kits. Some chile sauce. A microwave pasta dinner... yeah it was quite a busy trip full of "no nos", redirection, and "put that back"s. But it was fun for her and a good learning experience. She was sad to leave. And I'm afraid, she may not be so content just sitting in the cart while I push next time knowing that she can do it all by herself. Oh boy, what have I done!? ;)

Siiiiing!!

Now that the paci is gone, Kelsie now cries for us to sing to her at nights. We hear her trying to do it herself..."tinkle tinkle tinkle tinkle tinkle..star". :) that is her favorite song for me to sing to her. And this is what she likes to do now... lay on my chest while I sing to her. I keep thinking I don't want to make this a habit again like it was when she was an infant. We went through the sleep training, don't want to have to do that again! But at the same time, I do enjoy the sweet moment of snuggling with her and know that opportunity won't last forever!

Fun times with my girl

Today was out last class with MySweetArts. We have loved this little Friday morning outing and Kelsie is definitely getting more lively there. Here are some pictures from today.

 

With our besties! 

 

The Drum...they roll it around to each kid and sing...

"good morning Kelsie, good morning Kelsie, good morning Kelsie, its so nice to see you"

Focus..

And then we went to Chick Fil A afterwards and had yummy snack, fries and a milkshake!

Kelsie even went poopie in the potty while we were there! She just started using the potty 2 days ago and is doing such a great job! I was surprised she held it during class and went on the potty when I asked her to. She's growing up!

 



 

She was being quite entertaining and was getting a lot ot attention from the workers. One guy was waving at her and she kept cuddling up to me saying "shy.."