Spring Days

Spring is in full bloom here in Olathe and we are back to living outside and loving it! We just wrapped up an amazingly beautiful weekend and are looking forward to our first really warm week. Hank and I were already outside swinging this morning before school which was a great way to start the day:) I just wanted to update everyone on Josie and fill you in on Hank's latest. 

 Josie has recovered very well from her surgery and (knock on wood) there have been no choking incidents which is the best sign that it is working! She is also getting back to her normal energy levels. Unfortunately, the sinus issues have persisted and we aren't quite sure if the month long course of antibiotics that the infections disease doc prescribed is going to cut it. She did great on the antibiotics but once we go off we are back to the old sinus symptoms. We saw her KC Ear, Nose and Throat doctor last week and Josie needs a new ear tube so we will be back in the OR in the next few weeks to fix that ear. We are hoping it will help with her headache symptoms. She is also getting her 5 year molars which is not an easy process when you don't eat and chew. The chewing motion really helps those teeth break through faster so it may be a long road to seeing the new teeth. Overall, Josie's health right now is a day to day, sometimes a moment to moment situation. She has times where she feels great and we can go about our regular life and there are still many times where she just doesn't feel good and is in pain. I'm starting to get tired of waiting to see her in the morning and determine if it is going to be a good day or bad day just by the way she looks when she wakes up. She is having, what we would call, little episodes of head pain that are slowing her down but she just can't really tell us what it feels like so it is a little bit of a guessing game. I think it is probably a combination of the teeth, ear, and sinuses causing them. We are tweaking her meds a little to see if we can reduce the sinus inflammation, as well, as trying a nasal antibiotic for one last push on that lingering sinus infection.

Hank is having a great time enjoying the weather and playing outside! He pretty much runs all day:) He has made amazing progress at school this year and met all but one of his speech goals so we have had to find a new school for next year. It really turned out to be a blessing in disguise because we just love his new school and he is super excited about starting. He is going to Heritage Christian School next year in the afternoon class and I was really impressed with the program when we visited. He will have a couple of friends from our church in his class so it will make it an easier transition. As always, Hank is into anything about racing right now and his favorite question is "Woo (still working on the 'u' sound:) want to race?" which is asked about 50 times a day:) He is still into drawing and coloring and got a new how to draw book for Easter that we have been working on everyday. He is very focused on his drawings which is so cute!

Chad and I are doing good. We have been working hard on the garden and Chad recently rented a garden plot at our church for the summer so he can expand his growing operation:) Its great because it is within walking distance and the kids love to go there. Of course, there is also a large parking lot there so we get a mix of running races and gardening while we are there. Chad's work has slowed down a little so he is home more which the kids and I absolutely love!

I celebrated my birthday this weekend and I have to say it was probably one of the best one's I've had. My folks came up Saturday and took us to lunch. Sunday, Chad made me breakfast:), I had lunch with two great friends (sans kids), and we went to a family cookout with our Lifegroup in the evening. The kids had a blast playing with their friends until it was dark outside. Made for a late Sunday night but those are the nights when you make such great memories.

We are excited for this weekend! Chad and I will be sharing our story and the message of Special Connections, our support group for families of children with special needs, with our congregation at church. It is an amazing opportunity to share what it is like to raise a child with special needs and recruit volunteers for our future respite nights. It has been such a great experience for Chad and I to do this together and we are really looking forward to some fun events this summer with the group.

I hope you all have a wonderful week and weekend celebrating Mother's Day. This holiday is always extra special to me because I got to share my first Mother's Day with Grandma Jo. I miss her everyday but will especially miss her this weekend.

Surgery Update

I'm not quite sure where to begin with all the medical stuff going on lately. I've had a lot of questions about Josie's surgery and next steps so this is the best way to update everyone:) I apologize in advance for the length but it is the best way to get all the information to family and friends. Josie had an endoscopic repair of her laryngeal cleft on Friday. A laryngeal cleft is a gap between the oesophagus and trachea, which allows food or fluid to pass into the airway.^[3] (to quote Wikipedia:). This has allowed food, drink, and even saliva to get into Josie's lungs. We tested a temporary repair in December and she lost all symptoms of choking and began eating more. As the temporary repair went away we started seeing those symptoms again so the doctors determined that she was a good candidate for the permanent repair. They had been hesitant in the past because there was concern she may require a trach as a result of the surgery. In December they examined her airway and it was much more enflamed than they anticipated so it became critical that we find a permanent fix to the aspirations. The surgeon was very pleased with the surgery this time. He created scar tissue in either side of the gap and then stitched it together so as it heals it will close the gap. The stitches will dissolve over a 40 day period of time. The surgery was quicker than we anticipated and the surgeon only worked on her for about 90 minutes. When he came out the OR to visit with us he said he thought it was a life saving procedure. This caught us off guard because while we knew it was serious and needed to be done we didn't realize her airway health had progressed to this point. Josie did much better than we expected in the recovery room. She had an anesthesiologist that typically does the cardiac and organ transplant surgeries and he was amazing. He did a great job of managing her pain but not to the extent that it effected her breathing. We are always concerned about her pain management after surgery and he explained to us that it is a fine line with kiddos like Josie who have low muscle tone and abnormal airway. Narcotics typically cause them to become even more difficult to breath normally so sometimes they have to weigh breathing versus pain. Luckily she did pretty well with the breathing and was off oxygen by midnight. 

This was our view pretty much the first night in the ICU. Josie had significant pain until about 11 that night so it was rough sledding for awhile. She has become quite a fighter which is good on most days, but on days like this where she is hooked up to a thousand and one different cords, IVs, and oxygen it is hard to restrain her. Chad often had to lay across her body and I would hold her head still or arm while the doctors gave her meds or took vitals. To be honest it was exhausting. Luckily they put us in one of the large ICU rooms so Chad could stay. He slept in a chair while I slept in the bed with Josie. If you've never been in a pediatric ICU when I say sleep it is not really sleep. It is very well lit even at night, lots of noise from Josie's monitors as well as other kiddos next door, nurses in and out every hour, and trying not to tangle our child's cords and lines while you lay with them. If I moved a muscle Josie would cry out and reach for me. We were so glad when they told us the next day that Josie had done well enough over night to move to a regular floor. That meant FREEDOM from most of the cords! We even got to go the kid's playroom and outdoor garden for awhile which was a nice break from the hospital room. We backed off the heavy duty pain medicine on Saturday too, but did it a little too soon. Josie was pretty uncomfortable until the evening but then she rested really well that night. The highlight of the day was Facetiming with Hank. That kid can make Josie smile through just about anything:) By Sunday morning we were ready to get home! 

We are scheduled to see our airway specialist in KC in two weeks and then travel to St. Louis again in 4 weeks. I know many are wondering if this means Josie will eat. Well, of course, in Josie style that is a complicated answer:) This surgery, while initially was intended to help her eat, really turned into more of an airway health surgery. Our next steps are to begin feeding therapy again and see if we can modify her foods to get around her other cleft, her submucous cleft, on the roof of her mouth. This is allowing food to get into her sinuses while she eats are partly to blame for the constant sinus infections. Our hope is we can modify food and avoid a corrective surgery for this, but if not we do have another specialist in St. Louis that we will see to have it surgically repaired. Right now, we don't really want to discuss another surgery if we can avoid it. Soooo, in the meantime she is back to eating a little and hoping to find some solutions soon.

 Mr. Hank sure had a good time while we were in St. Louis which makes it much easier to leave him. He spent the time at Nana and Papa's house and managed to fit in a high school and D2 track meet, hung out with about 1,000 college students and Gus, and ate all of his favorite foods:) He had a blast!! He has been fascinated by running and wants to run all the time. Now he really wants to RACE! We found a kids fun run for this weekend and I can't wait to see what he thinks about his first race:) Tonight he was really coaching dad on his running. It was too cute. Hank would run across the yard and then tell dad to. Then he would say "stand on the porch and watch how I do it". Hank runs across the yard as fast as he can and then walks back to Chad saying "see dad you have to try harder". He is like a little coach! He is doing awesome in school and it is amazing how much he has learned this year! He's also made some great friends in his class and is doing a sports camp with 5 of them this summer so we will still get to see them once a week. He is going to love it!

This experience at the hospital was very different from any previous surgery. One of our good friends at church, who is an interpreter, suggested we request one for Josie to alleviate some of her anxiety during the appointments. So I called St. Louis and they arranged for Josie to have one for her preop appointment, surgery wait time, recovery room, and they were available in the hospital room. It was an amazing experience. Josie immediately connected with the interpreter (helped that she had the same sign name as Josie's teacher:) and it amazed us how it gave Josie a voice. The doctors would be talking to us and generally ignoring Josie and the interpreter would voice what Josie was signing. It got their attention when she would say "STOP, I don't want, this hurts, I want to go home". It was really the first time I've seen doctors really pay attention to her. It also was helpful to us, too. In the recovery room my hands were busy holding Josie and consoling her so it was difficult for me to sign where she could see me. The interpreter was there to sign to Josie what I was telling her. They became fast friends and we will see her when we return. I just wished I had done this sooner, but will definitely do it for future appointments. This was just one example of the amazing people we meet on these experiences. Chad told me over the weekend that if it weren't for Josie he would never have had the chance to meet so many people who have this passion and dedication to a job that changes peoples lives. It is amazing to see their dedication and the gravity of some of their careers is something I don't know how they handle. The ICU nurses and doctors deal with life and death decisions everyday and they always greeted us with a smile and seemed to really enjoy their jobs. The Interpreter was passionate about giving deaf children a voice and changing the perception of the physicians about these kiddos. While the overall experience is definitely something we would rather not have to go through if we try to look for all these good things that are going on in our midst it is truly amazing.

Finally, we could not have gotten through this latest surgery without our pit team which is incredible! Nana and Aunt Karen cleaned our house after we left, Hank was in good hands, and Nana restocked our fridge before we came home. There is something AMAZING about coming home to a clean house and stocked fridge after several long days at the hospital. Mammy is keeping us company this week which is keeping Josie busy:) Josie's classmates and teachers sent her get well videos which was so fun for her to watch. The prayer warriors who prayed for Josie, our family, and her medical team, some of which have never met her, are so greatly appreciated.

Disregard any typos or grammatical errors, I'm still a tad sleep deprived:)

Surgery Update

 We've had a lot of questions from those of you who have been thinking and praying for Josie. We are so thankful to you for all your thoughts and prayers. This is the best way for me to get the word out to everyone so here it goes:) Sorry for the length of the post we just found out a lot of information.

We started our trip to St. Louis on Thursday afternoon with an upper endoscopy GI series to see if Josie's fundoplication was still intact where they wrapped her esophagus to keep her from refluxing. It looked great and they were unable to get any barium to leave her stomach and enter her throat. Also, they managed to get her to swallow a little barium and it made it all the way to her stomach so no blockage at all. This was all good news. Also, we met with the feeding therapist, but didn't come away with a whole lot of new information. She basically was going to wait to see what they learned in surgery before she could make any recommendations. Her initial thought is that Josie's inability to eat is a combination of things. Neurologically the message to swallow just isn't getting from her brain to the muscles that coordinate swallowing, there are some anatomical issues that make it more difficult, and behaviorally Josie hasn't had to eat in 4 years so that impacts it.

Friday was a very looooong day! We reported for surgery at 9 a.m. and she didn't go into the operating room until 1:30 so it was a long wait just getting her into the OR. It brought back a lot of memories for Chad and I and the multiple surgeries Josie has had. In Josie fashion, it was snowing, which seems to always be the case whenever she is in the hospital, since she was born in a snow storm in March:) The surgery started with the airway specialist doing an assessment of her airway and diagnosing Josie with a significant submucous cleft palate and an laryngeal cleft type 1. He came out and talked to us to explain what he observed and how he was going to fix it. The submucous cleft was much more prominent than he expected and he said down the road we may need to look at repairing this. This is why Josie is getting food into her nose when she eats. It isn't necessarily an easy surgery and children have to be at least four and a good size four before they would repair it. Josie is so small that she just isn't a candidate right now. He also was going to shave down her adenoids but she had no adenoid tissue at all so he left that area alone. The laryngeal cleft diagnose of a one was very good news. One is the smallest type of cleft and it is the most repairable. The surgeon said that it wasn't nearly as deep of a cleft as he was expecting and he filled it with a gel foam that lasts for about 2 - 3 months to see if we see any swallow or respiratory health improvement before he fixes it permanently. The permanent fix requires a stitch repair and then scarring to close the cleft. It is a more complicated surgery but he seemed to feel more comfortable with it after seeing her. The bad news was that her trachea, or windpipe, was very inflamed. This is the clearest sign of aspiration that we have had since her lung biopsies at Mayo Clinic when she was one. The surgeon described her trachea as looking cobblestoned. Basically, your trachea has little nodes that are minuscule running down it, when something is irritating the trachea they become swollen. As Josie swallows saliva, water, and/or food it is slowing trickling into her trachea and irritating it. This is dangerous because Josie's immune system is constantly fighting this irritation and thus far has done a good job of not developing a significant respiratory infection. The danger is that over time Josie will develop pneumonias and bronchitis because of the inflammation. The surgeon said the degree of cleft that she has doesn't always require surgical intervention but the fact that her trachea looks the way it does makes it critical that we try to fix the cleft. He said that it was "exceptional" that Josie hadn't developed serious respiratory illnesses. Chad and I think the combination of her diet and the constant use of antibiotics has really helped her in this area. The next steps are to see how she does with the gel foam injection and we will see the surgeon again in 8 weeks. If we see an improvement than he will schedule her for the permanent fix. I really think at this point we are more focused on her respiratory health rather than her eating. We are going to continue to let her eat and provide opportunities for her to practice eating, but until we get this fixed permanently we are going to be cautious. In the end, neurologically she may not be able to coordinate eating and swallowing effectively enough to get all of her nutrition by mouth.

After that, the GI doctor did a scope to see if Josie had any evidence of reflux or irritation in her stomach or intestines. She looked excellent which was really good news. Now we can start weaning her off of her reflux medicine which isn't good for her bone development and hurts our pocketbook too:) After the GI was done Josie went upstairs to radiology and did a sedated CT scan of her ears for her ear specialist in KC. We were hoping to get this done while she was under sedation at St. Louis because we were going to have to sedate her when we came back home to do it. Thankfully they were able to fit her in. Finally, she went back into the OR for an Auditory Brain Response test that precisely measures her hearing which took about an hour and a half. This was actually great news!! Her hearing hadn't progressed and she still has mild moderate loss in her good ear. We were afraid after her recent booth test that it had gotten worse.

Needless to say at this point Chad and I couldn't wait to see her because we were getting close to four hours in the OR. Finally, we got a call to go into recovery and as Josie likes to do she was holding her breath and making everyone nervous. They let me hold her while Chad tried to find something on the ipad for her to watch and calm down. It really wasn't working and even with oxygen her stats were dipping really low. Chad finally asked them to give her some pain medicine and with a little morphine she was able to calm down, still needed the oxygen, but at least was more stable. Since her airway was manipulated the surgeon wanted Josie in the pediatric intensive care unit over night for closer observation. If you have never been in a PICU before it is an experience we would rather have not had again. This isn't the first time Josie was been in there but the first where we stayed the entire night. They pushed Josie and I up to the PICU floor on a bed and as they pushed us into the room 8 doctors and nurses were all crowding in, asking questions, getting vitals, and putting a ton of wires on Josie. It is a little overwhelming to say the least. Luckily there were able to wean her off the oxygen before we went to bed and basically just got vitals every two hours and gave her a little pain medication. It is a heartbreaking place to be to see other children in such bad shape. We saw several kids being brought in from surgery with entire medical teams following them and they looked like they were really fighting for their lives. I felt so grateful to be sleeping in that bed side by side with Josie who although she had had a really rough day was going to walk out of that hospital the next. The individuals who work on that floor day in and day out just amaze me.

Needless to say the next morning with Josie off the oxygen and doing okay we really pushed the doctors to let us go home. We were ready to get to our own beds and out of the hospital. Anytime Josie saw a nurse or doctor walk in the room she had three signs she would always sign; later, don't want, and no:) Pretty much in that order. Her nurse got to know them well:) Luckily we were out of there by noon and home by four. Josie had some facial swelling yesterday and we didn't do a good job of staying on top of the pain so the evening was difficult but she is really doing good today. She's already eaten a little cool whip and had a good nap. We are going to take things slow this week for her since she had so much anesthesia but she should be back to normal soon. Hank was very excited to see her, as was she to see him. They really miss each other when they are separated. He at least had a great time at Nana and Papa's and I think he offered them some good entertainment:) He also notified them that he was born outside and his name is Jesus:) You never know what he is going to say next.

We thank all of you for your thoughts and prayers. We really can't tell you how much it meant. The words of support on facebook and through texts told us we weren't alone while we were there and it really meant more than you can imagine to both of us. Thank you so much!

Thanksgiving

We hope everyone had a wonderful Thanksgiving with family and friends!! We had nice Thanksgiving with Nana, Papa, and Uncle Phil at our house. We've been putting together a thanksgiving tree and asking the kiddos what they were thankful for to put it on the tree. They seem to have gotten the concept very well. Hank's first thing he was thankful for was Uncle Phil. So cute:) He was also thankful for Nana and his dogs. Josie was thankful for her teachers, Robin and Nancy, Aunt Karen, and cats (don't know where that came from because she is deathly afraid of cats:).

The fall seems to have flown by and the kids have made such great progress! Hank is loving school and is really talking more. He pretty much repeats anything you say now. For good or bad:) He also decided he didn't want to wear diapers anymore which was exciting and cost saving to say the least. He has done awesome! It is nice to have one kiddo out of diapers. Hank also had his first school parties, one for Halloween and a PJ and pancakes party. Chad went to his PJ party and Hank really enjoyed daddy meeting all of his friends. Chad said it is hard to believe he is growing up so fast. He just looks like a little boy running around the classroom and interacting with his friends.

Josie has had a pretty good fall. We've continued to battle strep and sinus infections. At this point she is good for a few days off antibiotics and then starts a slow slide downhill. She is on antibiotics until her surgery this week to ensure we are healthy when we get to St. Louis. We are hoping they have an answer for the constant antibiotic use. At this point she is unable to fight off a cold on her own without some sort of antibiotic intervention. Josie is, of course, loving school and starting to write a little more. She is getting much better at writing her name and she is really getting into counting now. We've made a little classroom in the playroom that she is constantly using. I have to say she is one of the bossiest teachers I've been around:) I must not have a good attention span because she is constantly signing to me to pay attention and look at her when we are playing.

Thursday we are headed to St. Louis for Josie's surgery and a number of appointments before hand. I have to be honest I'm much more nervous about this surgery than any past. I guess with Josie's latest health issues and the fact that we may get a final answer on her ability to eat is stressful. Add in a new hospital and traveling from home it makes for a high anxiety week. Thursday afternoon Josie is going to have an upper GI study and then a couple of appointments with a feeding therapist and pre op. Friday morning she will go into the operating room for a number of procedures. Right now she is scheduled for 4 1/2 hours of OR time so it will be a long day. First, two airway specialists will look at her palate, tonsils, and laryngeal cleft and biopsy her lungs. We won't know exactly what they are going to repair or modify until they get a good look at her. They may shave her adenoids down to reduce the infections she is having and insert a temporary gel into her laryngeal cleft to reduce her ability to aspirate food into her lungs. If the temporary fix works then they will be more willing to do a more permanent repair in the future. Then the GI doctor is going to examine her esophagus and stomach for any irritation and try to determine if she is still refluxing. We would love to reduce her reflux medicine if it is possible because it impacts her bone density, so hopefully they see some improvement. Then, they will take her to CT to do a CT scan of her ears for her ear specialist in KC. We were so glad they were able to fit this in so that we don't have to sedate her when we return to KC for the same test. Finally, they will take her back into the OR for a auditory brain response test to get a clear picture of her hearing. We should talk to each specialist as they finish their part. I think the anxiety from this trip is also a product of the fact there are a number of game time decisions so it is harder to prepare yourself. We don't even know if Josie will be able to go home or if we are in for a couple of days in the hospital. We will pack for the latter just in case. Hank is headed to Nana and Papa's for a few days so he will be in good hands and Chad and I can focus on Josie. Please say a prayer for Josie that she have minimal pain and quick recovery.

I will try to update Facebook as we go through the appointments and surgery and will update the blog when we get home. I know Josie is on a number of prayer lists and we greatly appreciate all the thoughts and prayers. Josie is so fortunate to have so many people that care about her:)

Home from St. Louis!

Ready for our first appointment

 (Warning: this is long but the easiest way to share the news with family interested in the trip:) We are home and had a quick trip to St. Louis this week! Where to start?? First, we were very impressed with all the physicians we met. Also, Josie did outstanding, spending a good 6 hours on Tuesday in and out of various doctor's appointments. She has become so social that she makes friends in pretty much every waiting room:) This was our first time in St. Louis and the whole area around the hospital was very impressive. The children's hospital is surrounded by a number of colleges for pharmacy and medicine, so it was a bustling area with students and physicians. There was also a bookstore!! Which is Josie's favorite!

Waiting, waiting, waiting:)

 We started Tuesday at 9 with our first appointment with Dr. Leonard, an ENT, and friend of our pediatrician and ENT here in KC. He was very good and spent a considerable amount of time talking to us and examining Josie. His description of her is that she is really a black box and they are nervous to begin modifying her airway when they aren't quite sure how she is going to respond. Basically, since she hasn't had a significant history of pneumonia they are more likely to just let her be and settle with a feeding tube. Also, there is considerable concern that her feeding issues are primarily neurological and not an anatomy issue. To fix her airway they need to narrow it and this does have a small, but still risk of requiring a tracheotomy to breath in the future. We would definitely rather have a feeding tube than trach so we aren't going to explore this surgery more until they have taken a close look at her airway. At the end of the 2 hour appointment and the addition of another airway specialist, Dr. Molter, we decided to come back and they will take Josie into the OR to examine her airway in detail. There will be two outcomes. First, they diagnose her with a Type 1 laryngeal cleft (which was diagnosed at Mayo) and do a gel foam injection into the hole. She has had this done twice with no improvement. They would like to see her improve after the 3rd time and it would tell them if it is beneficial to explore a more extensive surgery for a permanent repair. The good thing is that the gel foam only last 6 months, so if it makes her choking worse we just need to make it through the 6 months to get back to normal. The second outcome is that they diagnose her with a Type 2 laryngeal cleft (which is what our ENT at KC has diagnosed her with) and at that point there is no repair that they feel comfortable with. They are also going to look at her palate and adenoids. They may shave her adenoids a little to reduce all the drainage and thus reduce our antibiotic use for drainage. They can't remove her adenoids because she will get even more food in her nose than she already does without them.

Travel, Josie style

 Before we left the ENT office we did a booth test for her hearing since it falls in their area of expertise. We had noticed lately that she didn't seem to be hearing us as well and our concerns were confirmed. Josie tested moderate-severe in her good ear and this was a significant decline in her hearing from the last test. We always knew that there was a very good probability that her hearing would decline but it is still upsetting to see it happening. It is one of those things that will never come back. I think this is the part of the trip that bothered me the most. Even though we had seen a decline in her hearing, gosh darn it, I just wasn't prepared for how bad it was. To be honest it really bothers me that she won't hear my voice anymore. She is getting close to being in the range for a cochlear implant so that opens another box of new appointments with our cochlear specialist here in KC. They are going to do a much more thorough hearing exam while she is in the OR when we go back to St. Louis.

Enjoying dinner with daddy

After that fun morning we headed to meet her new Gastroenterologist who was our pediatrician's instructor when she was in med school. Josie enjoyed the fact that he was Dr. White's teacher:) He felt that GI wise she was looking very good. Our primary concern is the amount of reflux medicine she is on which can have an impact on her bone density. He gave us detailed instructions on weaning her down and things to look for as we do it in case it doesn't work and her symptoms return. Also, she is on a medicine that numbs the pain receptors in her gut so that she can tolerate enough food to stay hydrated and gain weight. The doctor suggested we continue on this medicine since she is doing so well and that the pain is most likely a result of the fundoplication she had done when her g-tube was placed. She is on such a small dose that it doesn't have a lot of side effects.

Finally, we ended the day with a swallow study. Basically, they strap Josie into a chair in front of an x-ray machine and try to get her to eat barium laced food. They wanted to take x-rays as the food goes down to see if it was penetrating into her lungs. Not the best scenario for a kid who doesn't like to eat anyway. I got her to put a little food in her mouth but she never would swallow it. Finally, they had Chad restrain her and tried to force some water into her mouth. She still didn't swallow. These are the kind of experiences that I swear take a year off of Chad and I's lives. It is so hard to see her in pain and uncomfortable. She kept signing that she was mad:(

We have a lot to think about before the return trip to St. Louis and we are waiting on a date for the trip. It is going to take some time to coordinate with everyone's schedules. Regardless of the outcome or future visits I do think Chad and I realized how blessed we are. Josie has made so many gains from our last go around with the medical appointments and it is so neat to see her socializing and making connections with new people that she meets. The last night there we were walking back from dinner and Josie was walking between us holding our hands. She heard a helicopter and we looked up to see a children's hospital helicopter coming in. My first thought was that someone's little one was on that helicopter and there are parent's somewhere who are so scared. Chad and I made eye contact and I could tell he was thinking the same thing. It really was a reminder of how far we have come. Not too long ago we were those parents with a kiddo in emergency care and now here we are walking hand in hand with a boisterous 4 year old who just had a blast hanging out at a restaurant and making friends with our waiter. I think it is so important for us to remember this and while it may have been a tough week we have a lot to be thankful for.

Getting Ready for St. Louis

Well, after months of waiting for appointments at St. Louis Children's Hospital I can't believe we are leaving on Monday to meet Josie's new doctors. We are excited and nervous! Chad, Josie, and I leave Monday afternoon for a couple of days there. She will be meeting her new Ear, Nose & Throat doctor, GI doctor, and having a swallow study on Tuesday. They have told us to be prepared to see other doctor's that day or stay for additional procedures later in the week. We are hoping we won't be gone too long but it will be nice to get a number of appointments into one or two days. Grammy Stewart is going to stay in Olathe with Mr. Hank. We are going to miss him terribly but I know he will have a good time with Grammy:) I will try to update the blog after we get back with news on the trip. I hate to hope for a surgery for Josie's future, but if they believe she needs one we may be one step closer to her eating safely.

Cowboy Hank

The kids have had a good couple of weeks. We traveled down south for the Labor Day weekend and celebrated Hank's birthday. I think the kid really had a birthday month rather than a birthday since we seemed to be celebrating left and right. The kid was a little confused by the time it got to the actual date:) Josie keeps telling us that it is her turn for a birthday party. She got over it a little when I said we are having a party for Uncle Phil's birthday this weekend:)  School is going very well for both of them and we've spent a couple of weekends at home enjoying Deanna Rose Farm and the good weather. Hank rode the horse at the farm for the first time. You have to be three years old and he has been keeping track of when he can ride it. Chad and I really wondered if he would be resistant when it came to the time, but as soon as we got to the farm he marched over to the horses and got on! Last weekend he said "I not Hank no more". So I asked him who he was and he said "cowboy". I told him there are no more name changes allowed until he is an adult. I don't think I'm going to start calling him cowboy even though I think he makes a cute cowboy. He is wearing his cowboy hat everywhere and leaves it in his carseat when I drop him off at school and puts it right back on when he gets in the car.

Signing "Go" she's ready to go!

This weekend we are headed to our first Pitt State football game of the season. The kids are super excited! Josie, who loves to watch Gus the Gorilla on YouTube constantly, keeps reminding me that Gus is not going to be at Nana's house:) I think this must be a love from a distance kind of thing. It will be interesting to see what she does when she sees him. Hank has to put on his Pitt State jersey anytime he sees football on TV so he is going to have a blast.

Hope everyone enjoys the Fall weather this weekend and I'll update the blog next week with info from St. Louis.

School Begins!!

Hank 1st day of Preschool

 The school year has officially begun and boy how life changes quickly! Hard to believe both kids are in school now and they are really enjoying it. Josie started August 12th and is pretty much in full swing now. She has 8 students in her class and there are two teachers plus two aides. They have divided the group this year into smaller groups of four and she seems to really be enjoying it. Her teachers have said she is signing so much more and it is good to hear that she has continued to make progress over the summer months. Chad is still able to take her to school each morning and she really enjoys having some time with him by herself. I know Chad definitely enjoys it too.

Josie and Hank on Josie's 1st Day of School

 Josie has begun the year going all day and is doing very well at school, but a little cranky in the evenings. They have rest time at school each day, but she isn't sleeping there so we are still on the fence on if she is going to handle going all day everyday of the week. The teachers are very good at working with us if needs to back off a couple of days a week, so we will see. Medically Josie has been doing okay. She had two bouts of strep throat, one before school and one after school started. This is the first time she has had strep and we are hoping we've got it beat. The fear is that with her already swollen and enflamed tonsils that we won't be able to get rid of it with antibiotics. I can definitely say she is one tough cookie. I got strep too and I don't think I've felt that bad since I had it way back in high school. It knocked me down much longer than her:) We met Josie's new pulmonologist and discussed the need for a sleep study. I was really impressed with her and she agreed with us that it's not worth putting Josie through the anxiety of a sleep study right now since she is actually sleeping on her own. We did a short three night study at home with an oxygen monitor and I haven't heard yet from the doctor how the results looked. Sweet Hank let us put the oxygen monitor on his toe to show Josie that it wouldn't hurt to sleep with it on. It didn't really calm her anxiety but was so sweet of him to try to help. She didn't set the monitor off at all so we were hopeful that she is getting good oxygen all night. It was his idea because he saw Josie getting upset as Chad and I were setting up the equipment. Our pediatrician is very worried about Josie doing well through a tonsil surgery so we are hoping that she kicks strep for good and that the oxygen study looks okay. We finally had a doctor's appointment that resulted in no followup! WooHoo! Josie has an eye we patched in the past that seemed to be moving out of alignment a little. Chad took her to the eye doctor this week and he thought it was nothing to worry about or followup on. We can officially check that off of our list.

Mom and Josie!

The boys!

 Hank is doing very well at school! Yes, he is going by Hank at school:) He is going to our local school district's preschool that is four mornings a week. They have been doing some testing on his speech skills the last couple of weeks and he barely qualified to stay in the program. I think Josie's love of playing school has helped him gain some skills. He has eight in his class, as well, with one teacher and two aides. He is talking at home about talking more. I can tell that he is starting to wonder why we sign now that he is around kiddos that talk all morning. The other day Josie was signing to him asking him to play a game and he said "Josie talk to me". It hurts my heart to hear him say these things, but it is so typical for him to wonder why his sister doesn't talk. I wasn't quite prepared to have the conversation with him but did the best I could. He has told me several times since when I'm signing to talk. I'm sure it is going to take him some time to figure it all out. He does likes playing with his "buddies" at school as he likes to tell me and the teachers send notes home every day telling us who he played with. It helps to have a conversation with him about his morning. Everyday when I pick him up he tells me he misses mama, but he's a big boy and doesn't cry:( Sweet thing. It's hard to see him already growing up and realizing there are some things he is just going to have to do even if he doesn't really want to. Hank had to make an All About Me poster for the first week of school and here is what he made:) It is definitely all boy:)

Hank's All About Me Tent

 We are headed down south for Labor Day weekend and are going to have a couple of birthday parties for him at the grandparents houses. He is adamant about having a Spiderman cake and pizza. He is super excited for his birthday! We have a small children's farm near our house that has horses for kids to ride. He has wanted to ride them forever but he has to be three years old to ride them. Every time I ask him how old he is going to be he says "3! ride the horses!". He has definitely remembered that, we will see if he really is going to get on one the next time we go:)

Happy girl on her way home from school!

 I seem to have been busy every morning that Hank's been in school which is good. That two and half hours flies by. I'm still doing some work for Josie's school on their website. Also, I've been meeting regularly with our churches youth pastor to assist him more on Sunday mornings with children with special needs and he is really excited about starting a support group for families with special needs. We are still waiting on final confirmation to start, but it looks like we are going to get it off the ground for the winter. Chad and I are both super excited about it! Chad has been so supportive of the idea and it's nice to have a husband who doesn't mind me adding work to my plate that doesn't equate to getting paid:)

Spiderman!

I hope everyone has a safe and fun Labor Day weekend! I know we are going to enjoy seeing family and celebrating Hank's birthday a little early!