Family: forever, for always, and no matter what

Thursday, July 28, 2011

Are We Done Yet?

Hey Everyone! This is gonna be short and sweet because I am one tired Mama!!

We arrived in Rochester LATE Tuesday night/Wednesday morning. Luckily the Smith Inn (my sister's house) still had a vacancy for us. We tried to get everyone settled and to sleep (again) so we could be up and ready for a 9am appointment Wednesday morning with a Pediatric Gastro doctor. We needed to meet with him prior to the PH Probe just to discuss what symptoms Kaylee was showing that led us to believe she was having issues with reflux. My sister had told me she was anxious for us to meet the doctor because she couldn't quite decide how to take him. So after about 5 minutes of having seen the man, the only thing I could think of was "Daddy Warbucks" from Orphan Annie. The guy looked just like him! Anyway...he was great to discuss and explain things to Troy and I, but you could tell he was a very "scientific" kind of guy...but he did have a good sense of humor. He decided, from what Troy and I had told him, that after the PH probe was done, he wanted Kaylee to start taking Pepcid at bedtime every night. This was something Troy and I were both hoping we could try, just to see if it will help her out.
So the PH probe and Endoscopy were scheduled for today, but I had to wait until 8:15 last night to find out what time we were to report to St. Mary's Hospital. Naturally, 6:30 we were checking in. Anyone who knows us knows that the Hoepker's are NOT morning people. I am especially not a morning person after having slept with Kaylee the night before! Sure, she cuddles, but she also pokes you in the face and pats you and claps, and tries to say "Hi" just to get you to open your eyes. OR when you wake up at 3:45 in the morning to find out that she has had a REALLY nasty diaper that requires a full PJ change. UGGHHH...5am came way to early for me. Anyway...the Endoscopy went well as did the placement of the PH probe. The aftermath has been a bit trying though. We have to keep Kaylee from trying to pull the probe out, otherwise we'll have to start all over. The probe is placed in the esophagus and has a tube that runs out of her nose and hooks into a monitor. Imagine trying to keep a 2 1/2 year old from pulling on it. Well, Mayo has imagined it, so they use something called "No-Nos". They are little triangular shaped "braces"  to place around the arm so the child can't bend at the elbow and ultimately pull the tube out. They are a really great idea, unless you are dealing with Kaylee. Honestly, for a child with a muscle disorder, she can sure wiggle her way out of those things. In fact, I just looked over and noticed one hand was completely free. Wouldn't that have been great; I stay at the hospital with her ad she pulls the probe out! Luckily, I was on the ball and got it put back on.
Kaylee is resting well right now and I hope that is the pattern for the night. Troy and Dylan headed back to Brandi and Matt's house tonight while I stayed here. Poor Dylan cried as they left. He did not want his sister or his Mama staying here without him. He hates when Kaylee is gone and I know he'll worry about her until he sees her again in the morning. He is such an amazing child, always doing what it takes to make sure Kaylee is o.k. We have a picture frame at home with the following saying: "Why we try to teach our kids all about life, our kids teach us what life is all about." Every time I look at that frame,  I can't help but think of Dylan and Kaylee's relationship and how much it has taught me. While I hate these trips, and the inconvenience of packing half of the house, and all of the struggles that lie ahead of Kaylee, I wouldn't trade this journey for anything...I am thankful for the lessons I've been taught, and most importantly, the bond my family has undergone. We are blessed.

I'll try to update more later this weekend when he get home. Thanks for all of the thoughts and prayers. Please pray for an uneventful night here at St. Mary's and for a smooth ride home tomorrow!!

Monday, July 18, 2011

SUMMER FUN!!!

Hey all! Sorry again for the lack of up-dates on Kaylee! We have been SUPER busy this summer with the big move. BUT, we are finally moved and pretty much settled in to the "new" house. It is so nice to have the extra room. Kaylee is loving all the space she has to explore. She'll walk all over the place just checking things out. Dylan thinks it is super cool that we have a long hallway he can race his trucks up and down. I feel like we finally have enough room that we aren't crawling over each other just to get around in the house, it is a GREAT feeling. I'm sure Troy will begin enjoying the new house when I finally leave him alone about all of the little projects that need to be done. :-)

So June was kind of a blur here. I had to work a couple extra days at the end of the school year rewriting curriculum. Lets be honest, I would have rather walked across hot coals than have to start my summer off this way. My brain was on overload and was seriously ready for a vacation. In the middle of the month we made our way back to Rochester for our 6month check up. Dylan LOVES these trips because he gets to stay in a hotel and gets to eat breakfast out. I wish I enjoyed staying in a hotel as much as he does, but the beds don't treat me as well as they must treat him.
Kaylee also have to have some blood-work ran with this visit. Because the new med (3,4 DAP) she was started on in January is a study drug, and not approved by the FDA, they have to closely monitor her. If any of you remember our Caring Bridge posts, you'll remember that getting blood from Kaylee is just about impossible. Well, to be in true Kaylee style, that process was nothing less than a nightmare. I was trying to keep her pinned down while two "blood suckers" attempted  to get blood multiple times, from multiple veins. I wasn't sure who to feel worse for, Kaylee was understandably upset and the two gals were feeling terrible about not being able to get her blood. They tried to find another person to help, but were unable to. Finally, they were able to get a small amount of blood, and hoped it was enough to run all of the requested labs. Naturally, this was how we started out the morning, so the mood was pretty much set...for Kaylee and I anyway. Troy and Dylan had gone to find something for breakfast, and were both in great moods!
We met with Kaylee's orthopedic surgeon to check on the scoliosis in her back. Things are pretty much staying the same, which is great news. She will continue to wear her back brace during the night and at nap time. We'll check back this winter and hope that the curve hasn't increased any. If it does, we'll have to become more aggressive. She might have to wear the brace more often, or we'll have to look at other options like casting. I'm praying things stay the same, because I can't imagine Kaylee tolerating her back brace when she is awake, and I don't want to imagine the trials that would come along with a cast. At this time, we have no reason to believe that we'll need to be more aggressive. With Kaylee walking so much, it really helps build up those muscles in her back, which also helps with the curvature.
Later in the day Kaylee was scheduled to have a swallow study. Troy and I both knew we wouldn't be able to follow through with it because she would have had to swallow 10 CCs of something. 10 CCs is really nothing at all, but for someone who doesn't swallow, it is a MASSIVE amount! After talking with a doctor about the whole deal she agreed that it wouldn't be a good idea at this time. Instead with met with an amazing occupational therapist during this time and did nothing but play with food. We painted mirrors with pudding, held goldfish crackers in our teeth and counted, chewed on straws, and participated in several other crazy things.  Kaylee was in heaven during this appointment and Dylan enjoyed this style of appointment way better than the others.
We had the rest of the day open so we visited Aunt Brandi, Uncle Matt, Luke and Evan at their house. We had dinner with them and then all the kids had time to play. Within three minutes of leaving to head back to the hotel, both kids were fast asleep!
On our 2nd day of appointments we met with Dr. Selcen. She had rescheduled the appointment so she could see Kaylee at a better time. By that I mean that Kaylee has some really good times during the day, and she has some pretty crappy times during the day. 10:30 is a great time for Kaylee. She has finished her morning feeding and has had enough time for it to settle, and is ready to play. So, we thought this appointment change was great. Kaylee started off throwing a fit, and I thought for sure this would be another nightmare to live out, but thankfully, she settled down and started showing off for Dr. Selcen. She walked all over, pointed out things Dr. Selcen asked her to, signed several things, and even tried to take off with one of Dr. Selcen's toys. Dr. Selcen was very pleased with everything she saw, but not surprised by any of it. She knows that Kaylee is able to do some amazing things, and it will just take time to get there. She did decide to increase her dose of the 3,4 DAP, which we started that next day. Kaylee seems to be tolerating it just fine and continue to make improvements with her eye tracking and tongue movement.
We had one last appointment, which we kind of just threw in, to see if we could get some questions answered. Troy and I have both been wondering how much longer Kaylee will actually need her trach. It isn't that we are in a huge hurry to get rid of it, but we also don't want to leave it in longer than it is necessary. Kaylee is beginning to get frustrated when she can't express herself, and we can't help but think that when the trach is gone, she'll be able to vocalize even more. When Kaylee was originally at Mayo she was seen by an ENT doctor, Dr. Coffer. She was great to work with, so we decided to get her opinion on things. As always, she was very approachable, and understood our stand point very clearly. She took a quick look at Kaylee's airway...which was shown on a screen in the room. Dylan thought this was AWESOME, Kaylee, not so much. She didn't care to have a long tube shoved down her airway, and following the procedure, she did some major finger shakin' at Dr. Coffer. It was hilarious. Anyway...after looking at her airway, she thought things looked pristine, her words, not mine. She did notice some swelling in the back of Kaylee's tongue, which she thinks could be do to reflux. Even though Kaylee has had a Nissen done, she still throws up very regularly. Dr. Coffer suggested that before we try capping the trach off, we need to be sure that if she is refluxing, we have it under control so we don't cause her to aspirate. One other minor obstacle might be Kaylee's tonsils. It isn't that they are really big, but where they are located in her throat, they are slightly obstructing her airway. With those out of the way, it is one less thing for her to have to work around when breathing. Troy and I are both o.k. with the tonsil removal, because we know that with Kaylee, they will eventually cause a problem! I think it is Murphy's Law! We aren't sure when/if they'll remove them, but I'm sure we'll be looking more seriously at it in the next few months. Beyond those two things, Dr. Coffer felt confident that we might be able to remove the trach in about ONE YEAR!! Troy and I were both shocked and thrilled. If, after we start the process we realize that Kaylee isn't ready, then we are more than willing to leave the trach in, but if she's ready, I don't want to be holding her back. SO, following that appointment we scheduled another one for the end of July. We'll head back to Rochester on the 27th to have a PH probe placed in her esophagus. They'll monitor her for 24 hours to check the amount of acid in her stomach and to see if she is refluxing. If she is, we'll have to start her on a med to help control it. They usually use something like Zantac or Prevacid. Once we have that in order, we'll begin capping the track off during the day, and she'll have to use her mouth and nose to breath. If she can tolerate it well, then we'll try it at night, under watch at a hospital. This will all take time, and we don't want to rush anything. We want to be sure this is the right decision, and she can handle it. BUT, if she is ready, we'll be able to remove the trach and let the stoma close up. As excited as I am about the possibility of no trach, it also scares me to death. Funny, the idea of ever putting the trach in scared me to death,  and made me sick to my stomach! I guess you just can't make me happy huh!

The rest of June was spent pack up the house and preparing to move. Not the ideal way to spend summer, but we dealt. The weekend of the 4th we loaded everything up and headed west. After several long nights we finally got things put in their places. We had to spend a few days without appliances, but with Nana and Papa right across the street, we just raided their house and used their appliances! Good thing we have cute kids, they didn't seem to mind the constant intrusions. Finally, the appliances arrived just as our family from MN and MO arrived. We spent an awesome weekend with everyone celebrating birthdays and playing T-ball. We were super sad to see everyone head back home, but are looking forward to seeing them all again next July, when we celebrate Andrew and Ashley's wedding. From what I hear, there is going to be a very handsome ring bearer and a princess of a flower girl....:-)


Well, I hope you are all enjoying your summer! I'm feeling a little like it has passed me by, but such is life. Hopefully things will go well at Mayo next week and I'll have more to report.

 I'll leave you with some pictures of our summer...enjoy~ 



Dr. Selcen, Mama, and Kaylee

















            A little pudding painting




Dylan playing T-ball




Kaylee's funny face! She was trying out some sweet and sour sauce, and loved it!






Fun in the dug-out~


A little light reading on a Sunday morning.

Friday, June 3, 2011

We are walking!!!

WOW! How has it been more than a month from my last post? Where has the time gone??? Oh ya, I was swallowed up in the end of the school year! Good news: I survived, and so did my students.

 This year the "end of the school year" was a little tougher on me. Dylan's "end of the school year" meant graduating Pre-K and getting ready to move on to Kindergarten. Again, I ask myself, where did the time go? Seems like yesterday we were coming home from the hospital and I would spend the next several weeks just holding and snuggling him. Now, we are preparing for Kindergarten. It seems to me like once a child starts school, the time really just zooms by. I'm not ready for that...I want to keep him 5 forever, well, for as long as I remain the "favorite" girl in his world anyway! :-) Dylan celebrated his 5th birthday on the 25th of May. It seemed more like a birth-week for him. He started the week with a birthday party with friends, which he loved. We had 6 kids over to help celebrate and they were all wonderful! On his actual birthday we ALL went to Pizza Ranch for supper. Kaylee loved her first trip out for supper with the whole family, and Dylan was incredibly happy to have Kaylee with us. To finish up the week, we had another birthday party at the end of the week to celebrate with the extended family. As usual, Dylan was spoiled rotten! He does seem to really be enjoying his new Spider Man bike! We've been on many bike rides in the last week.

Well, as you can tell by the title of the post, we have more great news coming from our house. It was late January that Kaylee started taking small steps by herself. She wouldn't go far, and often times would depend on the furniture to help support her while trying to walk. However, she has long moved on from then. In the last few days she has decided she can do it all by herself...and she can! She has walked all through the living room and kitchen with NO help. She is beyond proud of herself, as are Troy and I. To see the smile on her face after she has walked across the room, well, it is pretty much priceless. I remember while Kaylee was still at Mayo right after being born. We were sitting in a "care conference" and I remember Dr. Selcen saying that she might be 3 or older before she walked. At that time I thought it seemed like forever and I could never imagine her not being able to walk by then. It kind of felt like a black cloud just hanging over me. However, today that cloud was pushed away and the sun came out. It doesn't seem like we've been on this ride for 2 1/2 years, and it doesn't seem like forever before Kaylee started walking. I guess it is a good thing that it doesn't seem like it has taken forever. I am so excited for her to be able to be more mobile. She has already figured out that she can get places so much faster by walking, and she thinks we can better keep up with the rest of us too.

Her swallowing hasn't really made any changes. She is playing around with food and putting food in her mouth much more than before. If someone has something to eat, she thinks she needs to have it too. She'll put food items up to her mouth, roll her tongue around it and sometimes even bite down on it. I think she is starting to realize that we all eat, and that it is enjoyable, so she is wanting to do it too. Just like walking, she saw all of us doing it, wanted to also, but it just took time. I believe the swallowing will be the same way. It is just going to take time, and we must all learn to be patient. It is especially hard for us to remain patient on this issue simply because swallowing would eliminate so many of Kaylee's troubles. It too will come though, I just know it will.

We make a trip to Mayo on the 14th for a few days of appointments. I'm super excited to see what Dr. Selcen thinks of Kaylee's progress. My only worry is that Kaylee wont be the most cooperative, as Dr. Selcen's appointment is at the end of a long day of other appointments. I'm also excited to see the Orthopedic Surgeon, Dr. Stans. He was impressed with Kaylee's ability to walk with help the last time we were there, I can only imagine how pleased he'll be seeing her walk on her own just 6 months later.

Happy summer to everyone! I hope you all get to get out and enjoy yourselves in the next few months. We'll be busy moving, but I plan to make plenty of time for trips to the park, picnics, and a few days at the pool too!

Wednesday, April 27, 2011

Needing Prayers

Before I get too carried away with an update, I have a VERY SPECIAL request tonight. We need some prayers...not for us, but for someone who has played a MASSIVE role on getting Kaylee to where she is today. Without going too far down memory lane...when Kaylee was born, her little hands were in tight little fists that wouldn't open, and movement was very limited. Along came Shannon, the OT at Mercy, and she began to work with Kaylee. She would pop into Kaylee's room with a bubbly personality, and a belief in Kaylee that was beyond anything I could imagine. She never once doubted that Kaylee would have full range of motion with her hands and fingers, or that Kaylee would one day be able to crawl and walk.  Throughout her time with Kaylee, we became pretty close with Shannon. She has a spunk about her that absolutely draws you in. Last week, Shannon gave birth to a beautiful little boy named Hudson. Here is where the prayers come in...Hudson's heart isn't working the way it needs to. Today he underwent one of multiple surgeries to try to correct the problem. Please, please, please, say a prayer for baby Hudson, his amazing mommy, Shannon, and his daddy, James. We have seen first hand how much the power of prayer can do, and this little guy needs it now.

As for us...we are great! We spent our fist Easter at home, all together!!! The last two Easter's, Kaylee has been in the hospital. It was so awesome to get up on Sunday morning and be together as a family, and not have to split our day between kids. Dylan and Kaylee both enjoyed an egg hunt, but probably Dylan more than Kaylee. She was doing good with it as first, but once she found an orange egg, it was all over. She could have cared less about the other eggs, as long as she had the orange one. :-) The Easter Bunny spoiled both kids multiple times. I don't remember the bunny ever being so good to me!!
We spent that day at my parent's house with my grandparents, Troy's mom, and my Uncle Joe all being there too. It was really fun to have the family together for the day. Both kids were soaking up all the attention. Miss Kaylee enjoyed herself so much that she didn't even take a nap. You would have never known either...she just kept truckin' along. However, when it came time for bed that night, she was out! Her heart rate was at 73bpm...which is pretty low for her!

We are gearing up for another busy weekend this weekend. My sister and her family are coming back from Minnesota. Dylan is SO excited to get to play tractors/trucks with his cousins Luke and Evan. He is counting down the days, and informed me today, that it would be more fun if he and Luke could play at Nana's house! I tried not to let it hurt my feelings, but honestly, what's so wrong with ME and OUR house?!?!? :-) Another big event this weekend will be celebrating Evan's 1st birthday!!! We are a couple weeks early in celebrating, but are thankful we get to share his day with him. I'm sure by Sunday evening, I'll have two very tired children, and I'm sure I'll be just as tired.

I'm sure there is more to post, but it is 11:00 and I still have lesson plans to write for tomorrow...oops, too much time on Facebook tonight. :-)

Hope everyone is well, and PLEASE don't forget to send a prayer up for baby Hudson tonight!

Friday, April 15, 2011

Hot off the press...

WOW! Funny how communication can get lost between Troy and I! We have both just decided that we need to seriously work on this! So earlier tonight I posted that we were having issues getting nurses to staff our case.....ya, strike that! We had one nurse who covered one day a week, and she too quit this week, BUT they have already replaced her. AND apparently they have hired two new nurses to cover our weekends as well! YEAH for our nursing agency...they have things all figured out!

Now, if Troy and I could figure out how we could maybe talk at night rather than just sitting across the room from each other, I could save myself from having to update, an update of this blog! Too funny....

Movin' on up

So apparently I've been slacking off here lately! I didn't realize it had been so long since I had last updated. Oops! I guess however, no news is good news. That seems to be the story here at the Hoepker house.

I don't think we've had any major events in the last two weeks, just more of the same things. We are still having a little trouble with the nursing situation. Both of our weekend nurses have quite, so as of now, we have no coverage during the day on the weekends. Our case manager had emailed, probably two weeks ago, to let us know she had interviewed and hired someone, but I've not heard anything from her since. I'm just gonna keep my fingers crossed that everything falls into place...what more can I do?

I was a little worried earlier in the week, Kaylee started with a low grade fever and a higher heart rate. Her nose was slightly runny and she was coughing just a tad, but not really enough to make me think it was a cold. After talking to her pediatrician, he decided he didn't need to see her, but we needed to keep a close eye on her. So, while my attention is on her, Dylan ends up with an ear infection! Poor kid, I went to pick him up at daycare and he just looked pretty miserable. Luckily for me, we have an AWESOME family doctor who was able to see Dylan that afternoon, even though I hadn't called until 4:30pm. After two doses of an antibiotic he was back at full pace again! In the meantime, Kaylee seemed to be making some small improvements. She was still needing some O2 while sleeping, but her fever had broke and her heart rate was much lower. Today, she is back to normal, and a new molar has slowly emerged...guess that would explain the rough part of the week!

Kaylee has certainly enjoyed the nicer weather. She's been swinging in her swing and going for walks in her stroller. She absolutely loves it outside. In fact, trying to get her out of her swing when she isn't ready, is a definite aerobic exercise for mom. I can't wait for it to finally stay nice out so we call all be out enjoying it. I'm also anxious to see how she reacts to the grass. Dylan hated it when he was little, but Miss Kaylee seems to have NO fear, so I'm sure she'll do just fine with it.

I guess we do have some exciting news....we are moving! We aren't going far, just to Cromwell. My grandparents have decided to build a smaller house, so we will be buying theirs. We'll be right across the street from them and my parents. While living right across the street from my parents is a little overwhelming, it will be such a positive thing for our family. Beyond our nurses, and Troy and I, my mom is the only other person who knows how to handle all of Kaylee's cares. We call on them all the time to help us out, so having them right there makes things easier on them as well. I think my grandparents are super excited at the opportunity to get to see Dylan and Kaylee everyday, and I know Dylan is very excited about it too.

Oh, one more thing...totally not about Kaylee, but still exciting to me, Dylan went to Kindergarten Kickoff last week. I'm not gonna lie, I cried when the paperwork came home. How did he get to be this old so fast?? I have SO enjoyed watching him grow these past years, and it seems like once they are in school, it just flies by! Probably the thing I am most proud of, is how brave he was. I remember in the fall, when it came time for preschool, he was so scared and nervous. Last week, he was so laid back and ready for whatever came at him. He didn't shed a tear! I'm so grateful for everything his preschool teachers have done for him, and am looking forward to seeing how much he grows in the next year.

Hug your kids tight....God knows, they grow up WAY too fast!

Monday, March 28, 2011

This is a joke, right?

Do you ever get the feeling that someone is just pushing you hard enough until you are just about to break and then they tell you it was all a joke?? I SO wish that was what was happening to me today...but nobody has called to tell me it was all a joke yet! Yet again today, we have no nurse. Ya, see why I think this is a joke? Our nurse called in today with a sick child, and naturally, the agency wasn't able to find anyone to cover the shift. Maybe it is just me and I'm living in some kind of "dream" world, but wouldn't you think that the agency would have an "on-call" back up nurse???? I wonder if all agencies function this way, or if it is just ours? Maybe this is just how it goes, but it seems to me that they could be more efficient if they had people who could cover. We do have "back-up" people, but none of them are able to be here on such short notice, and a couple of them are actually in RN school, so they can't work during the week. Beyond being frustrated with the situation in general, I was even more frustrated today, because it was my first day back after Spring Break. I'm not sure who to feel more sorry for, my students, or the sub who has to try and get them back into a schedule after not being there for a week. Thank God my husband puts up with me...he took the brunt of my frustrations this morning. I knew it wasn't his fault, but I was SO angry. It is such a pain to have to go into school and make sub plans, especially when we haven't been there in a week. Not to mention, our call from the agency didn't come until well after I should have called in to request a sub. It isn't fair to the school to have to scramble to find someone to cover for me. So, the dominoes just keep falling. I did however, call Troy to apologize for being such a brat this morning. Like I said, I'm lucky he puts up with me!! Oh a happy note, when I walked into Kaylee's room this morning, she was super excited to see me. We got some good snuggling done! :-)

Last week was a good week for Kaylee. She seems to finally (knock on wood) be getting over this cold junk. She is back to her happy, ornery self. Kaylee had her first visit with the dentist last week. I had been putting if off simply because I was afraid of what they were going to say about her teeth. Because she doesn't swallow, her spit just sits in her mouth, and as a result, her teeth look pretty nasty. We saw a pediatric dentist and Des Moines, and I was very happy with the visit. Dr. Barsetti was really great with her, and great at explaining things to me. After looking at her teeth, he told me they looked pretty good. I almost laughed out loud. He said that the "stuff" on them is really just a stain from her saliva sitting in her mouth, but the teeth themselves are fine. He also said her gum tissue was really healthy. He went ahead and scraped on them and polished them up, and we'll go back in 6 months for a check up. Kaylee tolerated things well. She wasn't happy, by any means, with the scraping and polishing of her teeth, but she didn't do any worse than any other kid on their first trip to the dentist.

Saturday night was a fun night at our house. Most people tell their kids not to play with their food while eating...not the case at our house! We end up playing with food in order to get Kaylee to put things in her mouth. So, Saturday night we had ribs and potato casserole. Kaylee had a ball! We got her to put the rib bones in her mouth, and all the while, her little tongue was going crazy. The drool was just pouring out of her mouth. Next we attempted the potato casserole. At first she just played around with it in her hands. Next, she thought she should use a fork to play with it, and that resulted in her flipping potatoes across the plate and up in the air. Dylan was a great help. He'd make sure Kaylee was watching him, and he'd take a big bite. Kaylee would copy him by putting her fork in her mouth. Once she tasted the food on it, she would do all she could to push it out of her mouth. Things got really funny once she got the potatoes on her hands. She would grab a napkin and work like crazy to get her hands cleaned up. Then she'd start wiping off the table. I think she might have inherited her aunt's OCD! (Sorry Brandi) After dinner, Dylan pushed Kaylee around in one of the kitchen chairs. Who knew chairs on wheels could be so fun for a two year old and a four year old. He would spin her like crazy and then push her across the room. The whole time this is going on Dylan is giggling like CRAZY and Kaylee was making all kinds of noises. It is so fun to watch the two of them play together. They have a very special relationship, for sure.

On Sunday Kaylee got to see Great Grams and Great Gramps for the first time since September. They made if back from Arizona on Thursday and stopped by yesterday morning with doughnuts! They couldn't believe how much she had grown, and all of the new things she is doing. Kaylee was pretty bashful, but after a while started to warm up some. It was almost like she really wanted to play, but just couldn't quite get over that shyness to do it. I'm sure after a couple more visits she'll be snuggling with them in no time.

 Well, Miss Thing thinks she needs to get into everything this morning, so I should probably go put my house back together now! Hope you all have a great Monday!

Sunday, March 20, 2011

Is it Monday yet?

What a weekend! I'm glad we are on Spring Break this week...I'll be using my time trying to get caught up around the house. We didn't have big plans this weekend, but I did intend to accomplish a few things. That was all put on hold though.

Saturday morning I woke up to our night nurse's voice. I thought it was odd that Kaylee would be up and out of bed before 8:00, (yes, we were blessed with a good sleeper) and then I realized it was almost 8:30, a half of an hour past Crystal's (the nurse) shift. I jumped out of bed and went to see what was going on. The obvious conclusion was that our day nurse didn't show up. This is very unlike her, so I went ahead and called into our nursing agency. I was informed that we didn't have anyone scheduled to work on Saturday. Funny, our schedule shows that we did. To make everything even better, the person who was on call for the agency had never handled the "on-call" process, so she had NO IDEA what she was doing. Fabulous! Anyway...after I told her that our schedule showed that we did have coverage for the weekend, she decided she'd do some checking and then get back to me. Twenty minutes later she calls back to again tell me that our schedule is wrong. DUH! At this point I was pretty well ticked off. I had made plans with Dylan for the day, and Troy had left early to go take care of some things at his mom's. Dylan was less than impressed that yet again, he couldn't do what had been promised to him. So, I let the on-call gal have it! I chewed on her for a while, knowing that she wasn't going to be able to do anything about it, but it made me feel better! Her response..."I'll have them call you on Monday to see what is going on." Ya, because Monday is going to help me with the current weekend problem?!?!? Honestly, where do they find these people? The whole time this is going on Crystal is still here playing with Kaylee, and trying to help this "on-call expert" figure something out. She seriously does not get paid enough. Finally, after about an hour of calling back and forth and Crystal basically taking care of the problem, we had a plan. Crystal, who had been at our house since Midnight, would spend the day with Kaylee, filling the day shift, and then another gal would take Crystal's night shift. However, there was no nurse today. Crystal is AMAZING to say the least. We are SO grateful for all she does for our family, and Kaylee absolutely adores her.

While I was glad to have someone with Kaylee on Saturday, I was beyond frustrated with the whole deal. It isn't that Kaylee's needs are so huge that you can't do anything else while taking care of her, but she does require a LOT of time. Her feedings, which are done three times during the day, take about an hour a piece. Usually, her morning feeding results in her puking 1/2 of it up. Beyond that, she has occupational and physical therapies that need to be completed.  For the nursing agency, it is just a matter of filling a shift. For us, our lives hinge on having a nurse here. I can't pack Kaylee up in the car and go somewhere with her by myself. God forbid we get down the road and she get a plug in her trach and needs to be suctioned, someone has to be right there. By taking her places during this time of year, we also risk exposing her to all kinds of viruses that could easily wear her out and put her in the hospital. Don't get me wrong, she has made leaps and bounds of progress, but we still have a very long way to go.

I was also frustrated that Dylan continually gets the short end of the stick. Nothing makes me feel more like a bad mommy than when you make a promise to your child and then have to go back on your word. Dylan always handles it so well, but I hate that he always has to compromise. He is an amazing child however. To watch him play with Kaylee and love on her, you would be blown away. He absolutely adores her, and would give up anything of himself, if it means that it would help Kaylee. I hope as they get older, that doesn't change.

I'll end the post with some positives: pictures of Kaylee and Dylan




          ~Dylan loving on his sister~



~Dylan reading "5 Little Monkeys" to Kaylee. She likes to shake her finger during "No more monkeys jumping on the bed!"

~Taking Elmo for a walk this morning. This stroller is such a help in getting her to walk on her own.~






~Showing Elmo all of the things Mama keeps in the kitchen drawers.~ She likes to pull all of the items out of these drawers and throw them across the kitchen! (Check out her CURLY pony tail)

Saturday, March 12, 2011

Dear Spring, Please get here NOW!!!

If I close my eyes and click my heels together three times, do you think Spring will arrive, like NOW??? Our house is now infested with germs of all kinds, and I am in desperate need of opening windows and airing this place out!

Kaylee in hanging in there. She seems to be in much better shape than Monday, but still not 100%. She just isn't quite as "happy" as she usually is. We have had a few nights of O2 and even a nap time where she needed to be on it. Her lungs are sounding pretty good, so I'm hoping she is on the downhill slide of things. We finished her antibiotic up this evening, so now I think I need to keep my fingers crossed for no future ear issues!

As for the rest of us...I think Kaylee shared her gunk with all of us. Dylan has been coughing and sniffling for a few weeks now, but seemed to be getting along o.k. This weekend he started complaining of his ear hurting. Great, just what we need! Troy caught it too. He was all stuffed up and pretty much miserable, or so he thought. Then came Wednesday....and he was REALLY miserable. He too, ended up with an ear infection. After three days on an antibiotic, he is starting to feel a little relief. I also felt like I was coming down with something, but it never really evolved, until today. UGGHH! I think mine has all settled in my sinus cavities. My face feels like it is going to explode, and I can't bend over without my teeth throbbing. SO, I think Dylan and I might try to make a trip to the doctor Monday afternoon. I have parent/teacher conferences on Thursday and I absolutely do not want to be dealing with sinus junk while trying to have conversations with parents.

Not much else is going on in the Hoepker house. We, and by "we", I mean Dylan and I, are anxiously awaiting Spring Break. He is super excited to have 9 "stay home" days. I'm not sure what he thinks we'll get to do, but mommy plans on organizing things for a garage sale this summer. I'm sure he'll be lots of help with that.

Here's hoping that Spring arrives SOON, and that you all are able to get a little bit of a Spring Break to do something exciting...which does NOT include organizing items for a garage sale. :-)

Monday, March 7, 2011

I should have never opened my mouth....

I knew it! The second I mentioned not having to go to Des Moines last Monday, I knew I was jinxing myself. Sure enough...guess who had to make a trip to Des Moines to the doctor today???

Poor Miss Kaylee just can't catch a break. Yesterday morning was really rough on her. She hadn't slept well on Saturday night and she was beyond tired. She also started running a low grade fever. After a good nap however, she seemed to be in good shape. She played well all night and was a pretty happy little thing. Then came bedtime. Things went smooth at the beginning, I got her all hooked up to her machines, and she was doing well. Her heart rate was just slightly elevated and her O2 was a little low, but nothing to really think twice about. An hour later, sh*t hit the fan! Kaylee started coughing and hacking and then the suctioning began. It seemed like no matter how much I suctioned, there was always more that needed to be suctioned out. It was like she was drowning in her own secretions. We put her on O2 and continued with the suctioning for a good 45 minutes before she calmed down enough to be able to sleep again.

Cami came at Midnight and was able to turn Kaylee off of the O2, but by 3:45 she was needing it again. Her O2 levels weren't bad, but she was working so hard to breath. Her respiratory rate was at 51 breaths per minute, when it is usually around 28. She was also running a low grade fever by this time. She went back on O2 at an 1/8 of a liter. This is a fairly minimal amount, but after having not needed it for so long, any O2 is more than we like to see. She was able to come back off the O2 later and maintained her levels after that. However, Cami did say her lungs sounded pretty bad. That was all I needed to hear to know that I needed to be getting her to the doctor.

We were able to get into Dr. Liedman at 10:50 this morning. After listening to her lungs, he was comfortable with saying it is just a cold. She sounded so terrible at night because it was all settling in her lungs, but once she got up and moved around, she was able to work some of it up. He thought this was just a viral thing, and because her O2 levels weren't too terrible, he wasn't really concerned. He did give us the go ahead to do breathing treatments as needed. I felt a little foolish for taking her to the dr. for a cold, but with Kaylee, you never know! I'm glad we went and were able to have him check her over, but still, a day off work and a trip to Des Moines with $3+ gas??? UGGHHH

I'm not even going to mention any future trips to Des Moines, just in case. I will keep my fingers crossed, along with my toes...if only that would actually help. I'm hopeful that Kaylee will kick this little cold and slide through the rest of the season. Keep your fingers crossed too!!!!

Saturday, March 5, 2011

The Good and the Bad

So we didn't have to make a trip to Des Moines on Monday!! Troy called Dr. Liedman, and thankfully, he suggested just using ear drops unless something changed. I thought we were going to slide through this little ear infection, but Kaylee had other plans. Wednesday night Kaylee seemed fine, but when I put her to bed, I realized she wasn't comfortable at all. I got her all hooked up to her machines and found her heart rate to be in the 150s, which is pretty high, for a "resting" Kaylee. Her oxygen levels were also lower than they usually run, so I knew the ear drops hadn't done the trick. On top of all of that, our night nurse wasn't Cami! Not that the other gal doesn't do a good job, but she isn't Cami!! This other gal only works about once or twice a week, so Kaylee isn't as familiar with her, nor is she with Kaylee. Cami knows her so well, that I just sleep better when she is here. Kaylee didn't sleep well that night, and neither did I. I kept hearing the alarm go off, and then I'd hear the suction machine. I swear that machine amplifies itself at night! I got up early and visited with the nurse about Kaylee's night. The alarm wasn't going off because of her oxygen, which relieved me a little, but her heart rate was pretty high all night....like 180 - 190s! Yikes....it hasn't been that high since last March when she made a trip back to Mercy for 3 weeks. Adding to all of this, we had a new day nurse start on Tuesday. This made me really nervous because she barely knows Kaylee, and here Kaylee is sick! I got myself all worked up thinking about how she might know know where the oxygen clip is for Kaylee's trach valve, or what if Kaylee needed a breathing treatment, would she know where to find it?

Troy called Dr. Liedman again on Thursday to see what our next step should be. He called in another antibiotic, but by the time we could get it picked up, she didn't get her first dose until 6pm. We could see a difference in her about an hour or so after getting it. Kaylee was also getting tylenol/ibuprofen for a temp too, so I think they were finally able to reduce her pain. I was hopeful she would have a better night, and also grateful that Cami would be back! Kaylee did have a better night in some ways, but not so great in others. She was able to get some better sleep, and her heart rate was much lower than the night before, but her oxygen levels were pretty crappy. She had to be on O2 for most of the night, and even into a good part of Friday morning. However, by noon she was off the O2 and her levels were great the rest of the day, and into the night. Kaylee's orneriness was back too! I think she is making up for lost time and Dylan isn't too thrilled with the overtime she's been putting in!

I am hopeful that once we finish this round of antibiotic she'll be good to go for a while. Hopefully this snow will finish melting, the weather will get warm, and summer will be here before we know it! Wishful thinking??? Probably, but I'm going with it anyway.

Sunday, February 27, 2011

Again, Really??

It was just two weeks ago today that Kaylee started with an ear infection in her right ear. We spent 10 days on an antibiotic and thought we had it licked! Unfortunately, today, Kaylee now has drainage coming from her left ear! She doesn't seem to be bothered by it too terribly. I've only seen her tug on her ear twice, and she isn't running a fever yet. I'm hoping that when I call Dr. Liedman tomorrow, he'll just call in another antibiotic, rather than making us drive all the way to Des Moines, again! I'm comepletely frustrated that we keep getting these ear infections when she has tubes in her ears. My other frustration comes with the effects of the antibiotic. She has had the worst diapers EVER. I can't begin to count the number of clothes changes we have to make each day. Not to mention, her poor bottom is bright red and irritated. Since finishing the antibiotic earlier in the week, her bottom is healing really nicely. I hate to think that we'll have to put her through it again.

Other than that, Kaylee is her usual self, STUBBORN! We've been trying to get her to work on walking on her own, but she is so stuborn, she'll just sit herself down. She'd rather scoot to wherever she wants to go. She has even managed to wear a hole in the "butt" of her pants! Only Kaylee! We are also still working on trying to get this girl to swallow! She fights us every step of the way. Last night I tried to get her to eat some applesauce. She was so mad, she was purposely gagging herself. I tried to get her to just play with it, and she did do some. She tried to feed me, which was interesting to say the least. She eventually got to where she'd put the spoon in her mouth with maybe just the smallest bit of applesauce on it. I wish there was a magic swallowing pill....it would solve so many of Kaylee's struggles. She has also been working really hard on annoying her brother. Poor Dylan, he'll get all of his trucks or legos set up just how he wants them, and she'll scoot right in and start destroying all his work. Dylan is only patient for so long before things begin to get ugly. Dylan had a friend stay the other night, and Kaylee was just as excited as he was. Anywhere those boys went, she was right behind them. They were both really patient with her, and put up with more than they had to.

Well, here's hoping for a Monday that doesn't include a trip to Des Moines. I think I'll keep my fingers crossed!!!

Tuesday, February 15, 2011

Keeping our fingers crossed!

Well, we were feeling like we had done pretty good so far this year, up until Sunday night. Miss Kaylee had spent a few restless nights, but otherwise seemed to be doing just fine. However, Sunday evening she started running a fever and pulling/tugging/hitting her right ear. We started with the Tylenol and were lucky enough to still have some ear drops from her surgery to put tubes in, in November. She gave her night nurse, Cami, a definite run for her money Sunday night/Monday morning. Kaylee was so uncomfortable her heart rate even got up to 203bpm. We haven't seen her heart rate there since last March when she went into Mercy with a "bug" in her trach. Any time Kaylee gets sick, it is time for us to get serious. We made sure we had the oxygen ready to go, if in fact, she'd need it. After a couple of intense trips to the ER last year, we make sure everything is ready to go and we have our ducks in a row.

Thankfully, we made it through Sunday night without any major issues....well for Mom and Dad anyway. Poor Cami, got here at Midnight to start her shift, and found that Kaylee's med-port and come unplugged and her feeding was pumping out all over her crib. So, not only was Kaylee feeling miserable, but now Cami had to try to change her and her bedding without really bothering her. If that wasn't bad enough, Kaylee threw up a couple of times in the night, so Cami had to change her then too. Cami does an AMAZING job with Kaylee, but I'm sure she was ready for that shift to be over!

I called up to Kaylee's pediatrician Monday morning, hoping to just get a prescription called in, but no such luck. We had to make a trip to Des Monies to have them look her over. Usually I wouldn't mind, but I could clearly tell it was just her ear bothering her. I didn't really want to have to put her in the car for two hours when she was so miserable. Naturally, we get there and he checks her over and says, "oh, that ear is the problem." DUH!!! I tried to tell him that earlier! He prescribed Kaylee an antibiotic and we were on our way home again. She got her first dose when we got home, and had a much better night than the previous ones. She did need a little O2 to help her out at night, but I think it was because she was so completely exhausted. Today, she is like a whole new little girl, she is playful and getting into everything! I'm so grateful that she is able to handle these things without having any respiratory distress. We are keeping our fingers crossed that this will be our only health issue, and we'll make it into summer where we can shake off all of these germs!

Monday, February 7, 2011

Two years ago today....

What were you doing two years ago today? Don't remember? Me either! However, because the staff at St. Mary's Hospital were so great, they recorded Kaylee's day, everyday, for her entire stay! It is so nice to be able to go back and see where she was then, and where she is now.

So, two years ago today Kaylee was still on a ventilator. She wasn't actually getting any oxygen through it, but is was giving her pressure to take those deep breaths. She was also only getting 45ml of formula every three hours. For those of you who don't know, 45 ml is equal to 1 1/2 ounces. Can you imagine eating only 1 1/2 ounces every 3 hours? They also started her on the Robinul this day. This is the medication used to help control her secretions. It was also two years ago yesterday, that Kaylee underwent an EMG.  This was the Electromyography (EMG)  which is a technique for evaluating and recording the electrical activity produced by skeletal muscles.  The EMG is performed using an instrument called an electromyograph, to produce a record called an electromyogram. An electromyograph detects the electrical potential generated by muscle cells when these cells are electrically or neurologically activated. The signals can be analyzed to detect medical abnormalities, activation level, recruitment order or to analyze the biomechanics of human or animal movement.
For as inactive as Kaylee was at the time, she was too active for them to get an accurate read on the test. It was decided that they'd have to try it again with her sedated.

Funny thing, after reading through these cards telling of Kaylee's day, I realized that I haven't forgotten any part of those days. I can even remember what I was wearing on certain days. When I read about the first EMG, I remembered that they had started it before Troy and I had gotten to the hospital that day. When we walked in the room, there was this massive machine in Kaylee's room with about 3 or 4 people standing around her. They were holding onto her and using this machine to "jab" her with needles in an attempt to measure her muscle response. It was a little scary to walk in and see.

As I think about her stay at St. Mary's, I also think about the other families who had children there. I wonder how their story turned out and where they are now?!?! I am hopeful that their story has turned out like ours....a little miracle that has changed their lives for the better.

I'll finish this post with just one of the funny stories generated by our little miracle:
A while back, I had ran downstairs to switch the laundry around. When I came back up, Troy had just gotten home from work and had walked in the door. He gave me a puzzled look and then looked down at the floor. At this point, I followed his gaze and saw that my purse had been emptied out on the floor. My wallet was wide open, pictures and dollar bills scattered around the floor, and no Kaylee or Dylan anywhere. Troy and I exchange glances again, and realize we should probably locate our children quickly. I hear Dylan in the bathroom so I head that way to find both of my children looking in the toilet!  Yep, you're right...inside my toilet was a dollar bill and a coupon to The Children's Place. Dylan is laughing like crazy, and Kaylee is trying to fish the items back out of the toilet!  I couldn't be mad...we've waited for two years for her to be able to do something ornery like this. However, it does make you wonder....what kind of trouble would she get herself into if she didn't have the CMS to slow her down????

Saturday, February 5, 2011

The Rest of the Story!



Chapter 2: Kaylee is home! 


We were so grateful to finally be bringing Kaylee home were she belonged! We really had started a new chapter in her life. Upon arriving at home we were greeted with a "Welcome Home Kaylee" sign, balloons, a driveway covered in messages made with sidewalk chalk, and Grandma Joyce and Dylan waiting at the door for us. Dylan was SO excited to get to see his sister again. He had only seen her once while at St. Mary's in Rochester. He was too little to be allowed into the NICU at Mercy.

Also waiting at home for us was Kaylee's first in-home nurse. It took us a while to get Kaylee all settled in that day. Bringing Kaylee home also meant bringing home LOTS of equipment. We had oxygen, a pulse ox monitor, an apnea monitor, and a suction machine. Kaylee had to be assessed by the nurse before their services could "officially" begin. Finally, we got Kaylee in her room and in her new crib. It had been a crazy day for her and she was exhausted. One thing we weren't used to having to do was train a nurse on Kaylee's cares. While in the NICU, they were the ones telling us how to care for her. Now the shoe was on the other foot. It was up to us to train them on how to care for Kaylee. Even though we knew her better than anyone, and we were very confident in our ability to care for her, it was still a very overwhelming feeling. Also overwhelming, was the idea of having a "stranger" in your house for most of the day. Our privacy was gone. As thrilled as we were to have her home, there was now, never a "break" from it.

The first couple months seem like a blur now! It took us a while just to get used to everything. Dylan did exceptionally well. For as shy as he was, he warmed up to the nurses very quickly. He adored his sister, and she was quickly working very hard to gain the attention of her brother. We had several different nurses working with Kaylee and after a while it became clear to us that a couple of them just didn't fit for us. They were great people, but we just didn't feel like Kaylee was getting what we wanted for her. Most of the time she spent her days in her crib. It was a lot of work just to get Kaylee out of her room and into the living room. However, we began to get more comfortable with all of the equipment, and we'd spend our evenings all together in the living room. At that time, it seemed like a huge accomplishment. Troy began to really work with Kaylee. Jane Brown, our PT, would come every other week and show us exercises to work on with Kaylee. She started making great progress, and we were thrilled with the small milestones she was making.  In August of 2009, Laura became Kaylee's primary day nurse. She was energetic and amazing with her nursing skills. Kaylee began to do more and more everyday. Things were going really well. Well almost.. during that time we were having terrible issues with Kaylee's G-Tube. The balloon that get inflated to hold the tube into her stomach kept "popping" and her G-tube would fall out. These things are supposed to last for 3-4 months. Kaylee's were lasting for maybe 3-4 days, sometimes even only hours. We were constantly having to call the manufacturer and order replacements. It seemed like just "one more thing" on top of everything else Kaylee was already having to deal with. In September, after a follow up visit to Dr. Selcen at the Mayo Clinic, we saw the doctor who originally placed Kaylee's G-tube. They suggested another brand, and maybe not filling the balloon quite so full. That seemed to do the trick! Thankfully, we were done messing with those pesky things.
While meeting with Dr. Selcen at that September appointment, she was so thrilled with Kaylee's improvement that she called Dr. Engel over to see Kaylee. He rarely sees patients anymore, as he spends most of his time in the lab doing research. He too, was very pleased with Kaylee's progress. They increased her medications, and told us to follow up in 6 months. At that time Kaylee was on Mestinon and Robinul. The Mestinon worked to allow her muscles to pick up more of the chemical needed to make them work. The Robinul was to help control her secretions. Because she wasn't swallowing, she was a constant drooling mess.

Things were going great. We finally felt like we could relax a little. We should have known better! In October of 2009 Kaylee came down with H1N1. After a very scary trip up to Blank Children's Hospital, Kaylee was admitted and placed on a vent to help with her breathing. She would spend 3 weeks there, working to recover. We were incredibly disappointed in the quality of care she received while she was there. Often times we'd go to visit her and we'd walk into the room and find her an absolute mess, with secretions coming out of her trach and mouth, and no one was around to help her. We decided then, that if Kaylee were to ever have to go back to the hospital, we'd return to Mercy. Like it wasn't bad enough to have Kaylee back in the hospital, we hit a deer coming home from seeing her one night! UGGHHH! At that point we were sure we didn't have any luck at all, except bad luck.

In November, Kaylee came home, and by the grace of God, was able to go off the O2 for a while during the day. We were beyond thrilled. This was just one more step in making her a little more "normal", not to mention, easier to travel with! She still required the O2 at night, but it was a minimal amount. She also had tubes placed in her ears that month. December was uneventful, if you can believe that! January rolled around, and with that came Kaylee's 1st birthday. Beyond celebrating her first year, we felt like we were also celebrating the fact that we had all survived that last year! Because of Kaylee's fragile health, we passed on having a birthday party for her. We just didn't feel like we could risk exposing her to something that could put her back in the hospital.

In March we returned to Mayo for another visit. By this time, Troy and I had lots of things to discuss with Dr. Selcen.
#1: Kaylee has ptosis (drooping eyelids) and we were concerned that it could be affecting her eyesight.
#2: Kaylee still wasn't swallowing and we anted to know what more we could do to help with it.
#3: After having all of those spells in the NICU when she'd stop breathing, we were worried about her cognitive development
#4: Now that Kaylee could sit up, she seemed like her head was always tilted to one side
Being as amazing as she is, Dr. Selcen set up several appointments for when we were to return in June.  We would see a pediatric eye doctor, a physical medicine doctor, and an orthopedic surgeon. Other than that, I don't think much else happened at that appointment. We returned home, and the next week Kaylee went to see her Pediatrician. She got her usual 18 month shots and came home. As usual, things didn't slow down. The next week Kaylee got sick again and landed in the PICU at Mercy Hospital in Des Moines. This time, it didn't seem as bad, or so we thought. She had caught some sort of bug in her trach, and it later turned into pneumonia. She was one very sick little girl!  It took some time before the medicine began to work. Again, she spent 3 weeks in the hospital before we finally got to bring her home again.

While all of this was going on, Kaylee's day nurse, Laura, had taken another job. We were beyond sad to see her go, but understood that she needed to do what was best for her. Luckily for us, Crystal, who started as Kaylee's first night nurse, agreed to come on as her new day nurse. It was such a great feeling to know that Kaylee would still be in great hands. Crystal had been with her since the beginning, and we knew she'd have high expectations of Kaylee.

Troy and I began to grow suspicious of whether or not Kaylee's medication was really working for her or not. For most people using Mestinon, you'll see them gain a lot of energy about 10-15 minutes after receiving a dose, or you'll see them "wilt" right before their next dose. With Kaylee, we never saw this. We visited through email, with Dr. Selcen and she gave us the go ahead to take her off of it for a week to see what happened. At first, we didn't notice a change at all, but after about 3 days, we started to see that Kaylee couldn't do the things she could normally do. She would try, but she just couldn't get it to work. We put her back on her meds and things returned to normal.

 In June we went back to Rochester for our follow up visits at the Mayo Clinic. We met with a physical therapist and an occupational therapist. They showed us several activities to work on with Kaylee, and we felt like we could go home and get to work on them. We also met with the orthopedic surgeon, as it was discovered that Kaylee now had Scoliosis. It is very common for kids with muscular issues to develop this condition. Her spine had a curve of 37 degrees. We would later take her to a prosthetics place to have a brace "molded" for her back. We also saw an eye doctor, who gave us great news. Although Kaylee did have ptosis, her eyesight was just fine! Thank God, we couldn't imagine having to try to keep glasses on an 18 month old. Overall, it was a great trip. We would return in July to pick up Kaylee's back brace. She would have to wear it for 12-14 hours a day. She tolerated it really well, and continues to get along fine with it.

Summer and fall were good to Kaylee. She has continued to make amazing progress. In July she started scooting around on her bottom. Most kids wear holes in the knees of their pants, not Kaylee, she wears out the butt of her pants. Once she realized she could get where she wanted by scooting, she was off, and into everything. We still continued to work on teaching Kaylee to crawl. Troy worked every night with her. Between our PT and Troy, she soon figured out how to crawl too. She still prefers to scoot, but does a lot of crawling as well.

In November Kaylee had to have a 2nd set of tubes put in her ears, as the first set had fallen out. She handled it like a champ. I was grateful that such a simple surgery, could really be simple for her too.


In December we made another trip the the MAYO clinic for more follow up appointments. There was A LOT to be done this time. Now that Kaylee was almost 2, there was a new medication Dr. Selcen wanted to try her on. Before doing so, we had to have several tests run to make sure Kaylee would be a candidate for it. This meant that we'd have a couple days of appointments. Dylan is always very curious about Kaylee's doctors, so we took him along. Our morning started early with a blood draw. Kaylee is terribly hard to stick, and I had my doubts about how this was going to go. Much to my surprise, it didn't take nearly as many tries as I had anticipated. Next was the EEG. Kaylee had to have several electrodes "glued" to her head so they could monitor her brain activity.
One of the side effects of this new medication is seizures, so we had to rule that out. This test took about an hour, and yet again, Kaylee surprised me. She was calm through the whole thing, and even fell asleep for a while. I was almost starting to wonder what was going on, because things never run this smoothly for us. Following the EEG was an EKG. We had to be sure her heart was functioning properly as well. This was a quick test, and with the help of her brother, she stayed entertained enough to let them get the information they needed. Next up, an x-ray of her spine and a meeting with Dr. Stans. Kaylee's brace is working! With it on, her curvature was reduced to only 17 degrees. Dr. Stans was very happy with this. He was also impressed that she was doing so well walking while holding onto something. He thought we should be very pleased with where she was. He did suggest maybe wearing the brace a little more throughout the day just to see if it would help her more. We'll follow up with him again this summer.  Later that afternoon we met up with Dr. Selcen. Kaylee was exhausted at this point and was not up for showing off her new skills. Dr. Selcen wasn't able to really get a look at where Miss Kaylee was. She did have all of our test results though. Everything showed that Kaylee could start taking this new med, called 3,4 DAP. (One of the tests did show a possible enlarged ventricle in her heart, so we would have to set up an appointment for an Echocardiogram the next day.) This new drug is so minimally used, that it is not FDA approved, so we'll have to go through MAYO to get it. Without the FDA approval, insurance doesn't cover the cost, but thankfully, it is really cheap! The purpose of this drug is to increase the amount of the chemical needed to stimulate the muscle. The idea is that between the Mestinon and the 3,4 DAP, there will be more of the chemical for longer periods of time, allowing Kaylee's muscles more time to pick up the chemical in order to function properly without fatiguing. We were very excited to get her started on this, and were able to give her the fist dose that evening. It was hard to tell if it was the new med or that she was just happy to be out of the stroller and free to roam around the hotel room, but Kaylee seemed to have a lot of energy that night. We were very hopeful! We would go back to see Dr. Selcen the next day, to see if she thought the 3,4 DAP was making a difference.  Our appointment the next day was scheduled for an hour after Kaylee was to get a dose of the 3,4 DAP. Dr. Selcen thought she noticed Kaylee's mouth being more closed, among other things. Troy and I also felt like maybe she was moving her eyes more and that maybe her tongue was moving more. We were very excited about what we were seeing. Later that day Kaylee had the Echocardiogram done, which revealed a very small hole in her heart. The cardiologist who read the report said this is the case in about 5% of people, and that it was nothing to be concerned about. WHEW!! I'd be lying if I said I hadn't been worried about it.

Two weeks later we celebrated Kaylee's 2nd birthday!! She was spoiled rotten, but deservingly so! We had a Princess Party. Dylan and Nana made her a pretty pink princess cake. Although she wouldn't eat any of it, she did throw it on the floor!

Maybe one of the most exciting things in our lives just happened this week....Kaylee started walking on her OWN!!! It was the most AMAZING thing I've ever seen. Making it even better, was that Troy and I were both home to see it happen. Kaylee was so proud of herself, and you could see her smile when she realized she could do it.

While I feel like I've written a book, I know I have left out TONs of details of Kaylee's journey. Hopefully throughout this blog, I'll be able to go back and touch on those missing pieces.

Until next time....

Here We Are!

Welcome to our blog!! I'm super excited to get this up and running! It is my goal to try to update weekly, but lets be honest...we'll be doing good if we update once a month! :-)                                                       
                                                                                                                                                                     
For those of you who know Kaylee's story, we are hoping this will be a way for us to better keep you up-to-date with Kaylee's progress and her everyday happenings. Not to mention, add a little humor to your life with all of the chaos that exists in the Hoepker household. 

For those of you who don't know the journey Kaylee has been on, here you go:

                                           Chapter 1:
Kaylee's story begins before she ever entered this world. In December of 2008 I found out that Kaylee was not swallowing any of the amniotic fluid. There were also a few other concerns, her little hands were in fists and her skin appeared to be really thick, she also had a pinky toe that slightly hung off to the side of her foot. Chromosome tests were done, but everything came back normal. We would just have to wait for Kaylee's arrival to know for sure what was going on. After many ultrasounds, and amnio reductions, and 4 weeks on bed-rest, in and out of the hospital, Kaylee entered this world on January 14, 2009, three weeks early.

Not breathing at birth, Kaylee was intubated and put on a ventilator to help her breath. The first few days of her life were pretty touch and go. We didn't see any movements from Kaylee and she was still not swallowing. The doctors started ordering all sorts of tests to try to narrow down what could be going on. The MRI came back normal, the EEG came back normal, the EKG came back normal, and all of the chromosome tests came back normal. As great as it was, we still didn't have answers. On February 4, 2009, Kaylee was flown to the St. Mary's Hospital (MAYO) in Rochester MN. There she was seen by Dr. Andrew Engel, and Dr. Duygu Selcen. She was diagnosed with Congenital Myasthenia. We spent about a month and a half in Rochester learning about Congenital Myasthenia, having a G-Tube put in place, and continuing with the intense physical and occupational therapy originally initiated at Mercy Hospital in Des Moines. There were many ups and downs throughout that time, but eventually, we got to a point where we thought we could bring her home. Kaylee had evntually been weened from the ventilator and was breathing with a little O2 help. However, before we could do this, we had to get in-home nursing set up. Thankfully, we had wonderful insurance who would cover this need. Being almost 5 hours away from home, we were struggling with staying up in Rochester with Kaylee, and coming home to Dylan (our then 2 year old). Working together, the St. Mary's in Rochester, and Mercy in Des Moines arranged what they called a "charity run". Mercy would come to Rochester to get Kaylee and bring her back to Iowa at no cost to us. We were more than thrilled to have Kaylee only an hour away from home. We were able to be with both kids in the same day!! Once Kaylee was back and settled at Mercy, she started having "spells" where she would stop breathing. One of Kaylee's biggest struggles with her CMS was that she couldn't swallow. It was determined that because she wasn't swallowing, those secretions were building up in her throat, blocking her airway. As a result, she couldn't breath past them. As our ability to get Kaylee home became more of a reality, we had a new struggle: What happened if Kaylee was home and had a spell? Would we be able to get her breathing again? Our local hospital doesn't offer care to babies other than delivering them. We were confronted with the hardest decision either of us had ever had to make: Do we, or do we not preform a tracheostomy? As the spells continued, we realized the only way we'd ever be able to get Kaylee home and provide her with the best care, was to do it.

On May 7th, 2009, Kaylee underwent surgery to have a tracheostomy tube inserted into her airway. That decision was the best decision we ever made. Days after, we saw more energy in Kaylee than ever before. Taking away some of the work of breathing for her, she had more energy to put into other things...like playing! Finally, on June 4th, 2009, after 142 days in the NICU, we brought our daughter home!


Chapter 2 to follow...it is almost midnight, and I'm tired! More to come!