Family: forever, for always, and no matter what

Saturday, August 25, 2012

Super Heroes are for real!!

I used to think that super heroes were pretend, but considering what Kaylee as been through this summer, and the grace that she has shown through it, I'm now convinced that super heroes are for real. She is Wonder Woman! I honestly thought that our last trip to Mayo would be tough for Kaylee simply because of what she'd already gone through up there this summer. Kids are smart and she knows that every time we've headed North this summer, she's been through the ringer. Kaylee is Kaylee though, and she came out of this one like a champ, yet again! I honestly don't know that I know anyone who is stronger than she is! I sit back in awe of all that she has to go through, and yet she is still such a happy, funny, little girl. God is good!!

This final trip was a short one, but none the less, it still required another stay at St. Mary's hospital. The plan for this one was to put Kaylee under (again) and check her airway to see how everything was healing from her last surgery. Once that was done Dr. Coffer would then put a smaller trach in place of Kaylee's current one. Once we could see that Kaylee could handle the smaller diameter through the night, we'd then try to cap her trach off to see how she'd do. Sounds simple, and it was, for the most part.

We had to register at the hospital at 10am. Once all of Kaylee's vitals were taken, we were sent back to the waiting room until they were ready. Finally at about 11:30ish they took her back to pre-op. We got her changed into her hospital jammies and again waited. The anesthesiologist gave Kaylee some meds to help relax her, and just like the last time, the laughter began. Kaylee was laughing at just about anything, which then had us all laughing. For the first time, I wasn't asked if I wanted to take her back into the OR. They came and got her from me, which was not nearly as easy as I had thought it would be. Kaylee was fine with it, but it really tugged at my heart. Back to the waiting room we went. We waited, and waited, and waited, and finally they came to get me so I could go back to recovery with her.  She was awake and MAD!!! She wasn't happy with the nurse and in true Kaylee fashion, she let her know. Kaylee had her arms crossed and was turned as far away from the nurse as she possibly could. I couldn't help but laugh about it. I was able to rock with Kaylee while still in recovery and she went right to sleep. This was probably the best she has been during the recovery period for any of the 3 procedures done this summer. However, just like the last two, her front teeth managed to get knocked loose again! They hung on for a little while, but this afternoon one of them fell out. I'm hoping the other one will make it. Thank goodness they are baby teeth! Kaylee was able to be in a room on the general pediatric floor instead of the PICU this time. We had great nurses who did awesome with her. In fact, when her IV was really bothering her, we didn't have to do much to talk them into just taking it out. She has such a hard time with IVs and they always end up sticking her in the foot. This one was right on the top of her foot just were the foot and leg come together. It just wasn't working for her. Every time she'd try to move her foot or even a toe, she'd freak out! She also seemed to have a tougher time coming out of the anesthesia this time too. I'm not sure why, but she just couldn't get settled. She was SO tired, but she struggled to get good sleep. We were up several times during the night, and I began to wonder if the smaller trach was going to be too tough for her. Kaylee finally settled into a good sleep at around 2:30 that morning. Naturally, the doctor was in to do rounds at 6am....not a minute after. She woke up and couldn't get back to sleep. She was grumpy and nothing I did would fix it. Later that morning she threw up but then seemed to finally come around a little. It is funny how it is so much like a "switch" with her. She can be so out of it and sick, and then just like that, she's ready to go again. (Another reason I think she must be Wonder Woman.) The respiratory therapist came in around 9am to try to cap her off. They told us they would try to do it for 15 minutes, but she might only be able to handle it for 5 minutes or so.  I was really nervous that this wasn't going to go well and that she'd only go for a few minutes before she'd begin to struggle too much. Kaylee must have remembered that this RT was one who knew her from her time in the NICU a few years ago. It was time to show off in true Kaylee style. He put the cap over her trach and stood back to watch. Kaylee didn't panic, but she wasn't a huge fan of it. She kept trying to get me to take it off, but once we got her focused on something else, she was good to go. 15 minutes later (!!!!) we took the cap off. She did it!!!! I couldn't believe it. For as sickly as we was an hour before, she sure became a complete super hero in a short 60 minutes. The RT was very pleased with how she handled the trial. He felt like she was taking in a good amount of air with each breath, but not having to work too hard to do so.  About an hour after the capping, we were loading up the truck to head home. Kaylee was exhausted and within 10 minutes on the road, she was out. It didn't last long though, 30 minutes later she was awake and ready to go again. She never did fall back to sleep on the trip home.

In the last few weeks we have been able to cap her trach for up to 60 minutes at a time. The other day she went for 3, 1 hour increments with it capped off. She did really well with it each time. I really don't think it will be too long before Kaylee is able to handle it being capped for the majority of the day. I would love to have it capped off during her time at preschool just to help filter out the germs and whatever else 3 year olds pass along. Yes, I did mention preschool. As hard as it is to believe, Kaylee will start preschool the Tuesday after Labor Day. She'll be attending Discovery Kids two days a week. The school district and AEA have been amazing to work with and things have gone really smoothly. I'm hoping it all continues that way when school starts. Kaylee's nurse will accompany her to school and speech services and a school car will provide their transportation. I'm so excited to see how she changes after having spent time with other kids her age. She's not really had that opportunity before now, so I'm hoping that by being around other kids, she'll work harder at swallowing and trying to talk so she can be like them.

Talking about school, Dylan started First Grade this last week. I LOVE having him in the same building as me. It is great to be able to walk him down to his classroom each morning, and a couple of days I even caught a glimpse of him in the hallway later in the day. I was deeply saddened by his embarrassment of me however. I asked him why, when I saw him in the hallway, he wouldn't wave at me. His reply, "I don't want my friends to know that you're my mom." SERIOUSLY???? I had expected that around 3rd or 4th grade but 1st??? Geeesshhh!! We are still working on getting used to that earlier bed time and a much earlier wake up time. He's done good so far, but by the end of the week, he was exhausted. Who am I kidding, I was exhausted too!

So, as my little Wonder Woman is snoring in her bed, the tiny little tooth fairy has slipped in and paid up. Troy thinks I'm crazy for wanting to save her first "lost tooth" but I just can't help myself. I'm sure in 15 years I'll think it is pretty gross, but for now, it is tucked in an envelope in my drawer. I think Dylan might be slightly jealous in the morning when he sees the tooth fairy has visited his sister. The poor boy doesn't have a single loose tooth yet! :-)

Friday, July 20, 2012

A Traveling Summer

I'm sitting here at the table listening to my kids sing as they play with putty, I am BLESSED!

I'm gonna climb on my soap box for just a minute, and I promise, I'll probably never do it again. It isn't really in me to "speak my mind", I'm normally the type keep my mouth shut, and keep the peace. However, something hit me today and I just feel like I need to vent, so sorry about your luck!
There are some sad things that have taken place in the last two weeks. Here in Iowa we have two young girls who have gone missing, and today a Colorado man took the lives of several people who were at a movie theater. I've read many posts about both of these situations and the thing that has struck me most, is the amount of judgment taking place.  It is probably the easiest thing in the world to do. We all have our beliefs and ideas and often times wonder why someone doesn't agree or think like we do. It happens, I'm guilty of it, I'm sure we all are.  I remember VERY CLEARLY three years ago, one of the biggest worries in my life, was that of being judged. Kaylee had joined our family, and instead of being a very positive mom, I was devastated to say the least. I had had a dream of what my family would be like when our second child arrived. I thought about dance lessons if this baby would be a girl, thought about the fun both kids would have at daycare, the perfect family picture hanging on the wall....what I got was exactly what I had dreamed about, it just looked slightly different than I had imagined and it took me a while to see that. While Kaylee was still in the hospital and Troy and I were traveling back and forth trying to be with both kids, I started to worry A LOT about being judged by others. I was truly doing my best as a mom but I was so worried that others would think I was failing. I worried the nurses would think I was a bad mom if I didn't go to the hospital to be with Kaylee everyday, I worried that friends might think I was a bad mom because I sent Dylan to day care even though I was gonna be home. Not that anyone ever dreams about having a special needs child, I had always thought I'd be the aggressive, positive mom. Reality was far different than that. I'm not proud of myself for this by any means, but it is what it is. I was a mess! I was scared and angry. Instead of being the mom who was trying to figure out what was wrong with my daughter and how to help her most, I was the mom feeling sorry for myself and doing a lot of crying. Luckily, I happened to be married to one of the greatest men in the world, who was just the opposite of me. He was doing everything I thought I'd be doing. He often talked me through those worries of being judged, and I remember making a promise to myself that I would try my best to not judge others. I know that what I thought I would be in this circumstance was not the case and I realized then, that until you are in the situation, you really don't know how you'll respond. So, I guess the point to this admission is that I've learned to pray in place of judge. My family saw the power of prayer first hand, and it worked miracles. Maybe praying rather than judging would make us much more powerful and successful? Just a thought! O.K., I'm stepping down from my box now!

The other night I started to blog about the events of our summer and suddenly I had about an hour's worth of rambling and side stories....it was a mess! So I deleted the "rough draft" and am going to give it another stab, hopefully this time with some sort of organization. I think I'm gonna try to go step by step through our events. Maybe that will keep me on track! :-)

Here we go: JUNE
On June 5th we headed to Rochester for follow up appointments for Kaylee, and also with plans for a tonsillectomy and adenoid removal. Packing for this trip was a complete nightmare because we weren't for sure how long we'd be staying.  At our last appointment with Dr. Coffer (the ENT doctor) she strongly encouraged us to stay in Rochester for a few weeks after Kaylee's surgery. With every tonsillectomy there is a chance of bleeding post op, and it seems that kids with trachs have a little bit more of a chance of this happening. She was concerned about was traveling and having a bleed on the road. Naturally, because I'm a worrier, I was seriously worked up over this. I didn't want to be away from home for 15 days (previous appointments and then the 10 days following surgery), I didn't want to be 1/2 way home and have her start bleeding, and I was freaking out about how she'd handle the surgery anyway. I spent a lot of nights trying to figure out how I was gonna make this work. Ya,  I'm a little OCD like that. Another issue was that Troy and I didn't want our in-home nurses to have to go that many days without work! So, Troy and I had kind of decided that if things went well, we'd stay for a few days after surgery and then head home, even though we'd have to drive back up in a couple weeks for a follow up. We were hoping Dr. Coffer would go along with that plan.
We got Rochester and to my sister's house were we stayed. The kids were VERY happy to be able to play with their cousins. Our first appointment was with Dr. Selcen, Kaylee's neurologist/CMS doctor. She was pleased with how Kaylee was doing, and Kaylee was very much a show off for her! She made a few slight adjustments with Kaylee's meds, told us they still can't find the 2nd gene mutation needed to identify the subtype of CMS Kaylee has, and we were on our way. Troy and I often laugh about how she used to be the BIG appointment and now ENT is the big appointment and Dr. Selcen seems so quick! Next we were off to see Dr. Coffer.  While talking with her about our concerns for Kaylee post surgery and feeling like Kaylee would do better at home with nurses who really know her, she also agreed that if Kaylee did well, we could head home....as soon as we were discharged. Troy and I were both excited about this, but still slightly nervous. Dr. Coffer is amazing! She always considers the patient, their family, and their needs. Everything she does is individualized, and well thought out. We cannot brag on her enough...she is just awesome! After a quick check over Kaylee, and removing her left ear tube which was stuck in a nasty ball of wax, we were given the number to call to find out what time her surgery would be scheduled. I thought that since they usually take the young ones earlier, we'd have to be up early, but I was wrong. (That seems to happen a lot.) We didn't have to report until 11:30 the next morning. Once we got checked in and  hospital jammies put on, the anesthesiologist came back to visit with us. Troy and I both stressed that Kaylee is a very hard stick and often takes a flight nurse to get an IV started. He was confident this wouldn't be a problem and then suggested giving Kaylee a little something before taking her back. Of course I can't remember now what they gave her, but Troy and I were laughing so hard! She was a complete nut after the med. She kept trying to grab Troy's nose, but she'd miss each time and just die laughing. Seriously, it was funny! They let me take her back to the OR and stay with her until they had her out. It never gets easier leaving her, especially knowing that this surgery was a big one for her. Not only were they doing the tonsillectomy and adenoid removal, they were also taking a biopsy of her esophagus to check for reflux, and did a little further investigating into her airway to check for extra or swollen tissue. Once she was out of surgery they let us all go back with her to recovery. She was upset and crying and still kind of out of it and nothing I did made it better. That is a terrible feeling as a mom. Troy noticed right away that her teeth and mouth were bloody. Apparently, when they were trying to get to her airway, they knocked her front teeth loose. It is my guess that they were still a little loose from when she fell in March. They did call an oral surgeon in to take a look at her teeth. He felt they would tighten back up in time. Another thing that we weren't impressed with was the number of poke marks on her from them trying to place the IV. I think we counted 8 spots! I wish doctors would listen to us when we tell them she is tough. It is like it becomes their personal mission to prove to us that they can do it. We later learned that it took 2 doctors to get the IV placed.  Anyway, Dr. Coffer came in and said that things went well. She said her tonsils looked like they had probably had some chronic tonsillitis. Also, she noticed that while Kaylee was in a "sleep state" there was some floppy tissue up behind her epiglottis that tended to block part of her airway while sleeping. In order for us to try to remove Kaylee's trach at some point, she really wanted that tissue removed to help make her successful. The problem was that she couldn't remove the tissue then as it would cause too much scarring. We would have to come back later to have this next procedure done. It seems that with Kaylee, you try to fix one problem and it leads to another! Anyway....we got Kaylee up to the PICU to her room. She rested really well the rest of the evening and had a great night. We tried to stay on top of her pain with meds, and it seemed to work. The next morning Kaylee woke up and was ready to play! I couldn't believe her...she acted as if nothing had been done to her. She was dancing in her bed and being as silly as she could. I literally stood there open mouthed! I think we even shocked Dr. Coffer! She came in to check on her and was also surprised by Kaylee's behavior. She felt like we were good to go so we packed up. I thought it might be a good idea to give Kaylee some of her pain meds before we left so she could sleep part of the trip home. It was a good idea in theory, but then there is Kaylee who doesn't play fair. She slept for a total of 10 (yes ten) minutes the whole trip home! She was happy and cheerful the whole time. I seriously think this girl has super powers! Dylan on the other hand, slept for an hour and 45 minutes. I guess worrying about your little sister can be exhausting! He had a hard time letting Kaylee go back to surgery and was super happy to see her after. When we finally got home Kaylee headed straight for Red's kennel. She was ready to play with her puppy. We were very cautious with Kaylee the next few weeks and stayed away from asking her to swallow. We also watched how far we put the suction tube when suctioning so that we wouldn't stick her in the throat. She did awesome! It was like she was the poster child for a tonsillectomy!  The rest of June was uneventful, just the way we like it!

JULY:
July had a fun and exciting start for us! Kaylee got to see her first fireworks! She loved it and we loved being able to take her to them. In the past we've opted not to take her because we usually have her overnight feeding started on the pump. We decided to start it late that night and take it. She kept trying to reach up and grab the fire works. When it ended she kept signing "more".  The next morning we headed to St. Louis for a family wedding. This was our first trip somewhere that wasn't centered around appointments for Kaylee! That doesn't mean Kaylee wasn't the center of attention for this trip though. She and Dylan were the flower girl and ring bearer in my cousin Ashley's wedding. We had to practice getting Kaylee into her dress several times because at first she didn't like it. One night I curled her hair all up  and put her in the dress to "practice being a princess" and she was hooked! She loved it all. The night of rehearsal was exactly what I thought it would be. Miss Kaylee wanted no part of walking down the isle with her brother. In fact, she actually plopped down in the middle and crossed her arms...she wasn't having it! After everyone else cleared out of the church, Dylan practiced with her a few more times and she decided it wasn't that bad. I was still a little worried that things would be different during the actual trip down the isle.  Ashley and Andrew (the bride and groom) took the kids to Build A Bear to make a bear. Dylan quickly picked out a bear and a St. Louis Cardinal's outfit for his bear. Kaylee wasn't so sure about the whole thing. She seemed a little creeped out by the un-stuffed bears. She finally got one picked out and wouldn't let anyone else help her carry the box out of the mall! Finally, it was the wedding day. She started out a little shy but when she saw Ashley in her dress she was really excited to be in her "princess dress". The bride and flower girl both looked fabulous! Troy stayed at the back of the church with Dylan and Kaylee and I went and sat at the front. When it was their turn to go, Dylan was very ready, but Kaylee, not so much! Troy got her started and pointed me out to her and that was all it took! She looked like she was floating down the isle. About the last three feet she bee-lined right for me. There was a hushed chuckle from all the guests. I couldn't have been more proud of both of my kids. They rocked! The wedding was beautiful and the reception had great food and a lot of fun dancing! We got home only to pack up a week later and take yet another trip! Geesh, I'm getting tired just typing about all of this traveling!

We returned to Rochester Sunday night just in time to celebrate my nephew Luke's birthday. Before making it to the party, we had to stop off and pick up Kaylee's new back brace. The company who makes it has some wonderful people working for them. Ross, the guy who made her brace, met us at 4:30 on a Sunday to make sure the brace fit appropriately before we had our 8am x-ray Monday morning. Kaylee's first brace was just a plain white brace, but Ross fixed her up this time! Her new brace is purple and has butterflies on it. It also has some pretty brigh,t hot pink velcro straps on it. She LOVED it!!! She had to carry it with her into my sister's house and couldn't wait to go to bed that night to wear it! We celebrated Luke's birthday and Kaylee even "ate" some ice cream. Our Monday started early with an 8am x-ray of Kaylee's spine. We put the new brace on and went into the room. Kaylee did everything they asked her to do and held super still while they took the picture. She used to cry and cry about have to do this, but I guess by now, she is used to it. Next we were off to see an oral surgeon. This was an appointment requested by Dr. Coffer. Because of Kaylee's muscle weakness, her mouth hangs open which has caused her to have an "open bite". This will more than likely lead to issues with her biting foods and could in fact add to trouble with her airway. Dr. Reick decided he wanted to take some x-rays of her mouth. At this point I was slightly frazzled because I couldn't imagine how in the world I was gonna gt Kaylee to go along with this. Yet again, my worries were for nothing. She was such a show off! She stood right up on the stool, held onto the machine, and bit down on the stick, just like they asked. Both of the x-ray techs couldn't believe how great she did. I was highly impressed with how well she listened and held still so they could do it. After viewing the images Dr. Reick decided that there is a procedure we could do to correct the bite. We would have to surgically place a device on her bottom and top jaw. It would have two little "screw holes" that would poke out of the bottom of her jaw and we'd have to "crank" them each day. This would separate the jaw and correct the bite, which would also help to open up Kaylee's airway. However, (there is always a catch) with her muscle weakness her jaw might continue to want to hang open which could then also cause the bite to return...thus meaning the procedure would have to be repeated, possibly years later. He wanted to do some checking with other colleagues to determine if this is something to be done soon, or if it would make sense to do it later. This could really help Kaylee when it comes to learning to chew foods and swallow them.  We are waiting to see what he would suggest and then we'll decide what we feel needs to be done. After that appointment we saw Dr. Stans, the orthopedic surgeon. After looking at Kaylee's x-ray of her spine he was very pleased with the curve and felt that we might be making some permanent improvements! In fact, he'd like our next x-ray to be done without the brace to see if the curve is really being improved. These are great strides for Kaylee and we are curious to see how those x-rays will turn out. I'm not really sure it will change much however.  If we decrease her time in the brace, the curve will get worse, so we'll probably continue to maintain the same plan we have in place. We were lucky enough to have a nice chunk of time before our next appointment that we ventured out and found a new place to eat lunch. The kids loved it! Kaylee really enjoys getting out and going places so she was having a blast. Our next appointment was for an esophagus x-ray. Troy and I were both a little confused on what this was for but we quickly learned it was a swallow study. We have tried and tried to do these in the past, but have always canceled them because Kaylee just doesn't swallow enough for it to show anything. This time was different though! Troy took her back and was able to get her to swallow enough for us to FINALLY get a picture of what is going on! I felt like doing a little dance over this accomplishment, but felt those in the waiting room didn't need to be subjected to it! What we learned is this: Kaylee is able to swallow, however, it is a very weak swallow. It takes her several attempts before she is actually able to make a complete swallow. The good news is that she is swallowing safely!!! The study didn't show any aspiration into her airway. The SLP (speech language pathologist) suggested we work on having Kaylee swallow "nectar-thick" foods. We'll try 3-5 bites at a time and give plenty of time for her to try to swallow it down. Once we feel she is consistently able to do this, we'll try to move onto some thicker foods.

On Tuesday we met with Dr. Coffer to go over the surgery plan. She was running behind and we waited over an hour to see her! Keeping a 3 year old entertained in a small room for over an hour is not an easy task. Kaylee finally gave in and took a snooze while waiting. Long story short, Kaylee would have surgery on Wednesday and then we will return in August to place a smaller trach and try to cap it off for a few minutes at a time. If she tolerates this well then we'll continue to cap it off at home. Once she can handle it being capped off for 8 hours a day, we'll then go back and do a sleep study to see if she can handle it being capped off at night. If so, we will then make a decision whether or not we want to pull the trach and let the stoma close, or keep the trach while we continue to work on swallowing foods. I HATE these decisions! I hated the idea of placing a trach and now I hate the idea of worrying about maybe removing it! Lastly, we met with a pediatric gastro doctor who looks like Daddy Warbucks from Orphan Annie. He is a very funny man! We met with him because the biopsy of Kaylee's esophagus showed that Kaylee is refluxing. He recommended that Kaylee continue to take Pepcid once a day. It was a short and sweet appointment, and we were grateful for that.

On Wednesday Kaylee went into surgery to have the extra tissue removed from her airway. They shaved tissue off of the back of her tongue and then used surgical forceps to cut away other tissue. She seemed to struggle more this time. Her afternoon was rough but she perked back up that evening. Later that night she was sitting up in bed and letting me read books to her. She was even playing around with Troy. We had a great surprise that evening too! We ran into one of the nurses who took care of Kaylee while she was there in the NICU. She came in to see Kaylee and was shocked by how big she was! I'm not sure why, but it made me cry to see her again. She was SO amazing to Kaylee and we always knew that if Lori was working, Kaylee would have a great day. Kaylee continued to have  a great night, sleeping well the whole time. Thursday morning we were discharged by 8am! It was one the quickest discharges ever!! We made it home in the late afternoon and Kaylee was more than ready to get in the house and play! She has continued to do really well again, and has only had a few doses of Tylenol. As I said earlier, she is AMAZING!

Today Troy went back to work and the kids and I went out for lunch with my parents. Kaylee again had a blast being out and about. She was doing a boogie for anyone who would watch her! We also took a trip to Walmart. As with any 3 year old, you wonder why you bring them along. That little turd kept trying to throw things in the cart! She absolutely cracks me up....Thanks Kaylee, you are a gift!!!

I'll leave you with a few photos of our little "princess" and her handsome brother!




Wednesday, May 30, 2012

On The Road Again

Hey everyone! I'm doing better....it hasn't been 6 months since my last post! That has to count for something right?

The last 3 months have been pretty uneventful, which is how we like it! We did have a little scare in March. Kaylee tripped and fell and knocked her two front teeth loose. I was torn on whether or not to take her in for a dentist to look at it. I kept telling myself, "they're baby teeth, what can they do?" but then my next thought was, "Jeez, what if it messes up her permanent teeth?" So, we were lucky and Dr. Tilley agreed to check her out for us. I really didn't want to drive to her pediatric dentist in Des Moines if this was going to be no big deal. Usually with Kaylee, everything is a BIG deal, but this time, it wasn't. I think we were in Dr. Tilley's office for a whole 10 minutes, including the wait time. He said they'd tighten right up and she would be fine. GREAT NEWS!!!

This winter really went well for Kaylee. She was never sick with anything more than maybe just a little cold. She even managed to stay healthy during Dylan's bout with pneumonia. She did receive her Synagiss (not exactly sure how it is spelled)  shot each month from November through April. This is a preventative shot to help against respiratory issues. She isn't a fan of getting them, and I'm not a fan of the cost, but they worked! I really shouldn't complain, insurance picked up the cost of them, THANK GOD! $10,000 a shot...yep, that is right, no typo here! I still struggle with how a company can charge so much money for a "preventative" medicine. There are no guarantees that it will work, but luckily for us, it did its job. They usually only approve this shot for the first year of life, and you are lucky to get it a second year. I never imagined they'd allow it for a third year, but with her muscle weakness, they probably see this as a cheaper option.

As April and May came around we started to have the conversation of Kaylee going to preschool. It hardly seems possible for her to be ready for this, but she is, and she really needs the interaction with other kids her age. So, in September, Kaylee will start going to preschool two days a week and then will also go in to the ECC (Early Childhood Center) on a third day to work on her communication skills with her SLP (speech language pathologist). We've have several meetings to get everything in place and we have just a few other little things to work out, such as nursing hours. We are lucky in that Kaylee's nurse will get to go with her to preschool. This will make the transition so much easier for her. It will change around some of our nursing hours, so we'll have to get that worked out too. It seems crazy to be on this side of things. Being an educator, I always see things from that side of the desk, but now I'm on the other side, and it is pretty scary. I want the best for Kaylee and I want her challenged, but knowing what is "best" is difficult to pin point. The school has been GREAT to work with and have really assured us that they'll do what is best for Kaylee. We have some great support from the AEA (Area Education Agency) to help ensure Kaylee is getting the proper support.

Summer has arrived and I have a feeling it will be gone before we know it. We'll head to Rochester on Tuesday for some follow up appointments and Kaylee's tonsillectomy. The ENT doctor would really like us to stay in Rochester for the 10 days following her appointment, but I'm not sure that is going to be best for Kaylee. We'd really like to come home so she could be with familiar nurses and have more one-on-one care. We'll have to discuss this when we get there. There is a 2 - 4% chance of a bleed after surgery, so the ENT doctor would like us to stay close, rather than have that happen on the way home. However, we feel like we can map out hospitals along the way until we get to Ames and then be fine.  I fully understand her concern, but I just think Kaylee will do better at home with familiar surroundings and nurses. Please say a prayer for her, to get through surgery without any complications and to heal quickly without any setbacks. We know we have a great ENT doing the procedure, but we also know how powerful prayer is. We are planning to stay in Rochester for a few days after her surgery and then we'll head home. We'll have to return for a 10 day follow up, but we have some other appointments wet for then as well. I'm keeping my fingers crossed that everything will go smoothly, as the rest of the year seems to have!

In July we'll be heading to St. Louis to celebrate the wedding of my cousin. Dylan will be the ring bearer and Kaylee the flower girl. I'm super excited to see them both all dressed up and am hoping for some great pictures too!

Just last week Dylan turned 6! I still have a hard time believing that 6 years have passed since God blessed us with him. It makes me sad that he grows so fast, but he makes us laugh everyday. He is such an amazing brother to Kaylee. She adores him, and he her. I hope they always keep the bond they share.

I guess that sums everything up for now. I'm sure I'll have more to post later next week.
Hope all is well for all of you. Enjoy your summer and spend lots of time loving on your family!

OH MY GOSH...I almost forgot! Our family grew by one last weekend. We welcomed a Fox Red Lab, named Red, to our family. Both Dylan and Kaylee think he is great, and Troy and I are pretty smitten on him too. He is the sweetest thing! Troy and I have both talked about what a great stress reliever he is. We've enjoyed this week of playing with him each night, as a family.  Here's a picture of our sweet puppy!



Wednesday, February 1, 2012

SIX MONTHS!!! REALLY??



I would love to give you all a list of reasons why I haven't updated Kaylee's blog is SIX MONTHS, but I can't think of ONE single reason other than life, it happens, and it happens a lot around here! I'm sure you all know how it goes. When you finally do have a minute to sit down, it is nice to do nothing more than just sit. That's my story and I'm sticking to it. Well, that and the 100 times I thought about updating but kept thinking about how much I'd have to type up and how long it would take, and before long I would have myself talked out of doing it. However, after watching Kaylee hang strong and endure a VERY LONG walk from the Mayo Clinic back to the truck, I realized if she could put the effort and time into that huge accomplishment for herself, than I could surely toughen up and update her blog.

I'm gonna try to go back six months and see if I can try to remember all of the events between now and then. I used to pride myself in my great memory, but here lately, that memory seems to be failing me. It surely has NOTHING to do with age!

When I last updated, we had just returned home from our summer Mayo trip. Kaylee had undergone a scope and and PH probe. The results from the probe showed that Kaylee was not refulxing but rather suffering from a condition called eosinophilic esophagitis. Eosinophilic esophagitis is an allergic inflammatory condition of the esophagus. Symptoms are swallowing difficulty, food impaction, and heartburn. The disease was first described in children but occurs in adults as well. The condition is not well understood, but food allergy may play a significant role. Because Kaylee doesn't eat anything  except for Pediasure, it was suggested that we switch to a new formula to see if it would stop her vomiting. We switched to a brand called Elecare and were hopeful that it would make the difference for her. Unfortunately it didn't work out that way. We finally gave up 10 days into the new formula. Kaylee's poor tummy was just a mess and because of that, her little tush was absolutely raw! The poor girl was having 5 to 6 stools a day. Since that didn't work, we just kind of played around with the volume of her feedings. It seemed that she would vomit more in the morning. We wondered if it might be because she is on a continuous feeding overnight and then within a couple hours of it being done, we were giving her another feeding. It seemed to help some, but there were still days when she'd vomit for no rhyme or reason. Talk about frustrating. The nurses would take her feeding really slow to help her out and she'd still get sick.  It doesn't seem to happen as often, but I wonder if the next time we increase her volume, we'll see the problem arise again. We did talk with the GI doctor earlier this week and they would like to try her on a steroid that is used to help this condition. The problem is, this medication is supposed to be swallowed. Yep, that could be a problem.

(So I took a quick break to get Kaylee ready for bed and came back to find her in front of my computer. This is what she typed: kpookkjk)

I'm kind of jumping around here, but prior to my interruption from Kaylee, I was telling about this steroid that she is supposed to swallow. This leads me into another accomplishment for Kaylee. This summer one of her nurses worked REALLY, REALLY hard at getting Kaylee to swallow, and she had some luck! Kaylee had good and bad days with it, but Melody stuck with her and throughout the summer Kaylee would have days where she could swallow about 6-8 bites of pudding or yogurt. SO, because Kaylee is doing some swallowing, we are going to try and see if she'll be able to swallow this new medicine. If she can't, we'll just continue on without it for the time.  Kaylee's nurses continue to work really hard on the swallowing issue, but Kaylee is so darn stubborn!! She tries them with every ounce of herself. I don't want to say we've gone backwards since this summer, but we certainly haven't gone forward with it. She has a really hard time swallowing her own spit, so she is constantly a wet mess. To make matters worse, her mouth hangs open so all of the saliva just runs out. Kaylee has also developed the terrible habit of pushing her spit out with her tongue. Most frustrating about this, is that we know she can do swallow sometimes. Troy has worked and worked with her and she'll do it for him, but the second he stops reminding her, she is back to pushing it out of her mouth. We have spent a lot of time pondering how we tackle this obstacle. Our doctors assure us that she will be able to swallow at some point, but it is so hard not to get frustrated and lose patience. So many of Kaylee's struggles would be solved if she would JUST SWALLOW!!!!

Alrighty, so in trying to go back and catch up and stay somewhat focused, I think I'm gonna go month by month...

August: Kaylee continued to work hard on her physical therapy. Most of this focused on climbing up steps and going down steps. She also worked on stretching out her hip flexers and her hamstrings. Again, because she is so stubborn she'll fight certain nurses on this. There are some nurse she knows she can't get by with it, but others are still too tender-hearted and Kaylee plays them like a fiddle. In time though, they've all toughened up on her and it has helped her tremendously. Jane Brown, her physical therapist, is so pleased with Kaylee that she is only coming once a month now! Kaylee continues to wear her AFOs (ankle braces) to help stretch out her ankles and help with walking.  OH, how could I forget, Kaylee also spent a lot of mornings visiting Great Grams and Gramps across the street. She'd walk over and visit with them each morning. She loved it and so did they. The biggest change in August wasn't with Kaylee though. Dylan started Kindergarten in August. I'm not sure who had a tougher time those first weeks, Dylan or myself. I literally cried myself to sleep on several occasions because I was so worried about him! Troy would try his best not to laugh at me, but there were times when he just couldn't hold it. He kept telling me that in 10 years from now I'd find it funny too. Dylan has adjusted really well and is learning so much. I'm always amazed at how much he learns in such a short amount of time.

September: Things stayed pretty calm in September. Kaylee's routine stayed pretty consistent. The girls from the AEA continued to come twice a month to work on fine motor skills and her communication. We are still working on sign language with Kaylee, but we are also looking at other options. As great as sign language is, it only works when you know it. The reality is that if Kaylee is out and about and is trying to communicate through sign, how many people really know it well enough to communicate back with her? Kaylee's SLP (Speech Language Therapist) has provided us with different options we can look into for communication devices.

October: Things turned upside down for part of this month. We lost a couple of AMAZING nurses in October. Melody, who I mentioned earlier took another job closer to home with better benefits. She did so much good for Kaylee. Melody could really push Kaylee, but Kaylee always respected Melody. They became VERY close to one another and I know it was a tough decision for Mel, but she has to take care of herself too! We had another nurse leave us for another nursing position with hours that better fit her needs. It was tough to lose two nurses who Kaylee had gotten attached to. It was also tough on our other nurses. Have two nurses leave within a couple weeks of each other left a lot of option shifts on the schedule. Thankfully, we have some WONDERFUL gals who stepped up and worked CRAZY hours to get our schedule covered for us.  It is so hard on Kaylee to get used to new nurses.  I was worried about having to take time off of work because we couldn't get coverage, but mostly I was worried about the gals who were covering all of these extra shifts. It doesn't take long for them to get burnt out and leave. I had these terrible visions of not having any nurses in November!

November: Our nursing situation continued to be a mess. We had about 2 girls trying to cover everything. It was nothing short of insane! We were having trouble getting new nurses hired, and communication with our nursing agency was lacking to say the least. Troy and I felt like we were constantly calling in to figure out our schedule. There was still that constant worry that we wouldn't have coverage, or if someone called in sick there was no one to fill the shift. After many calls and emails between the agency and us, it became evident that we had to have some kind of meeting to get things figured out. Troy and I were ready to start looking at different agencies even if that meant we lost the nurses we actually did have at the time. On a positive note, Kaylee helped decorate the Christmas tree on Thanksgiving day. She was so excited to get to put the ornaments on the branches. I got a good photo opt in when Dylan and her decided to play in the Christmas lights. They made some pretty darn cute Christmas cards!

December: We finally met with our nursing agency and had what Troy and I like to call a "Come to Jesus" meeting. We pretty much laid out everything we felt they were lacking. Things were bad enough they actually had 4 of their "people" come for this meeting to try to get things figured out. Luckily for us, our "new" day nurse, Stacie, was here for it and was able to help communicate some issues on the nurses side of things too. I can't imagine it was easy for her to stand up to her boss' but she did an awesome job of calling them on their faults. When the meeting was over we felt like we had a pretty good plan in place, but were still unsure if we'd see things actually follow through. I am happy to report however, that so far things have really worked out well!  Christmas was SO MUCH FUN this year! Kaylee couldn't wait to rip into her gifts. She had no time to waste waiting on anyone else to get their gifts open, she was all business. Naturally, she and Dylan (who am I kidding, me too) were spoiled rotten. It is so hard not to do! I really tried to have some control this year, but I think I might have let it go sometime between the 2nd and 3rd minute of shopping!

January: Yahoo, I made it! (Only 7 chapters later!) Kaylee turned 3 on January 14th! While there are days when we think time has flown by, there are still lots of days that it feels like this journey has been every minute of three years. It is hard not to get wrapped up in the every day things that come up, however, when I stop and think about all of the things that Kaylee has accomplished in three short years, I am speechless. Honestly, I remember when Kaylee was 3 days old and the doctor told us we may never bring her home. At that point she was so unresponsive and showing no signs of attempting to live. Now I look at this sassy, ornery, active child and I wonder how it is possible?!?!? This girl just walked maybe close to 1/4 of a mile out of the Mayo Clinic on her own and three short years ago she couldn't even breath on her own!! The human body is an amazing thing. She is a determined little thing and she isn't about to let you tell her how something is gonna be. She is in charge all of the time and we love every minute of it. Anyway...to celebrate turning 3 we had a Minnie Mouse party for her. She is OBSESSED with Minnie Mouse! We had Minnie Mouse cupcakes, Minnie Mouse plates and toys and napkins and clothes....etc. She loved her party!! I'm not sure how many times she made us sing the birthday song to her, but I know I sang it at least 5 times. Now that Kaylee is 3, she is eligible for Preschool! However, with it being the middle of winter, Troy and I were were concerned about sending her into the school with all of those winter germs. Well, let me clarify. The teacher in me didn't consider the germs. I just wanted her in a preschool setting so we could be challenging her cognitively so she doesn't get behind. Troy, the rational one, reminded me that it would be the dead of winter and Kaylee may not be able to handle fighting off those germs. Good thing he thinks logically because I REALLY don't want her back in the hospital again. Lucky for Kaylee, we can bring preschool to her. Through the school we have been able to to arrange home-bound services for her. She has a teacher who will come one day a week for an hour to provide pre-k instruction.  We were able to get an iPad for her, through the school, and a communication app to help her start communicating with others. That will be her focus during her "school" time. I'm excited for the possibilities this could bring. We trialed a Dynovox system, but it was so complicated I wasn't sure how she'd ever get it figured out. Luckily we don't have to worry about it now.

Alright, we are now ALMOST caught up! On Wednesday we headed back to Mayo for our followup appointments for Kaylee. We met with out ENT doctor first to evaluate where Kaylee is at now. Our goal is to begin taking steps to remove the trach. At this point we are waiting to remove tonsils and adnoids. We have tentatively set this date for June 7th. We'll have it done there, just so we can stay consistent with doctors who are providing care for Kaylee. The downside to having the surgery at Mayo, is that they'd like her to stay close for 10 days. There is always a risk with bleeding after a tonsillectomy, only 2 - 4%, but kids with trachs have a tendency to bleed more than others. We haven't decided if we'll stay the whole ten days or stay for just a few and then go back for our follow up appointment. We could always contact a doctor around here who would be willing to care for Kaylee if she were to start bleeding. The other thing to consider is what happens if we get 1/2 way home and Kaylee starts to bleed?!?! So needless to say, we have some things to think about before June.

Following her appointment we headed to Aunt Brandi and Uncle Matt's house to stay the night. Dylan and Kaylee had a ton of fun playing with their cousins, Luke and Evan. We finally got everyone settled down and ready for bed. This lead to a first for our family...in the past, when we travel, I usually sleep with Kaylee in case something comes up in the night. It isn't that I wouldn't wake up and hear her, but I always worry that I'll sleep to heavy or that her alarm will go off and by the time I get to it to turn it off, half the house will be awake. Troy and Dylan usually end up in one bed and Kaylee and I in another. However, because Kaylee has been doing so good at night, we decided to try Dylan and Kaylee together in one bed. This has NEVER happened before, so it was a pretty big deal for us. Kaylee and Dylan loved it. They giggled and played for a while until we finally had to get after them! It was so awesome to look over and see the two of them snuggled up together sleeping hard. To make things even better, Kaylee didn't need any attention that night. I never had to suction her, and she never set her alarms off! Yahoo!!

The next morning we had to be at the clinic for an 8:15 X-Ray of Kaylee's spine. This is something we do every 6 months in order to monitor her scoliosis. We take the X-Ray with her back brace on to be sure that it is helping with her curvature. The X-Ray looked great! Dr. Stans, the orthopedic surgeon, was very pleased with what he saw, and was happy with how well Kaylee was walking. We were a little concerned that Kaylee was outgrowing her brace as it was starting to rub on her g-tube. Dr. Stans didn't think we needed to totally replace the brace just yet, but it did need some adjustments. Luckily for us, we had time between appointments that we were able to run and get those made. It is working great now, but when we go back in June, we'll have another brace molded. Most braces usually last for a year and a half, which is right where we are with Kaylee.   Following the adjustments we went to see our physical medicine doctor. Dr. Skinner checks over Kaylee's physical abilities. She suggested we keep having physical therapy at least once a month just to stay on top of some of her stretches. Finally, we got to see Dr. Selcen, Kaylee's neurologist. We are always excited to see her and see how she reacts to Kaylee! As we expected, she was thrilled with where Kaylee is right now. Kaylee put on quite a show for her. I couldn't help but laugh at some of the attitude Kaylee was throwing out there. Unfortunately, they still have not been able to find Kaylee's genetic mutation. She did mention that they plan to go back and double check some of the subunits they've already looked at. It won't really change much for Kaylee, but it will still be nice just to know where the actual problem is originating. Dr. Selcen decided to increase the dose of the study drug (3,4 DAP) by a 1/4 of a tablet a day. It isn't a huge increase, but Kaylee has made so many improvements since being put on the drug a year ago, that we are hopeful it will help her out even more.

SO, while this trip wasn't overly exciting, I think we'll make up for it in June. We'll have some packed days ahead! I'm not really looking forward to Kaylee having to have surgery again, or staying the night in the hospital, but if it puts us that much closer to removing the trach, then I'll happily do it.

Do you remember in the beginning of my post how I mentioned that "life" has kept me from updating?? Just so you know...I started this post on Friday night and it is now Monday! Interruptions this time: putting Kaylee to bed, laundry, grocery shopping, Dylan coming down with pneumonia (YIKES right?) and work! I've learned my lesson though...6 months is WAY too long to go without an update! I'll leave you with some pictures of Kaylee and our family over the last little while!




 Dylan and Kaylee posing for our Christmas card
 Dylan and Kaylee playing with one of her new birthday toys!


Kaylee all ready to go see Grandma Joyce. She had to pack her bag full of toys to take on the "trip".


















                                                             Kaylee is 3!!!!

Here are some of my FAVORITE pictures.... the first one is Kaylee and Dylan starting the LONG walk from the clinic to the truck. This is the first of the two VERY LONG hallways she had to walk down. The second photo is of all three of my loves making the long walk, and the final picture is Kaylee at the very end of the last long hallway! She did it ALL BY HERSELF! There are not words to describe my joy in watching my daughter do something I wasn't sure we'd ever see!


Just so you know....I had a few more interruptions before I could even finish this post tonight! Such is life in the Hoepker house. I wouldn't trade it for anything! Although, if someone wanted to interrupt me with a glass of wine and a massage, I'd take that interruption without complaint! :-) 
Happy Living!