Thursday, February 5, 2009

Here is a photo of our two doctors. Words can not describe how great we think they are! This photo was taken after our final meeting with them.

Because I have given many details throughout this blog, I will make this short and sweet. So, here are our final results!

Both boys are considered to be moderate asthmatics. We think that sounds way better than severe! Because of this diagnosis, the doctors recommend trying breathing exercises and rest before reaching for the rescue inhaler! Both boys are on 115 mg. advair inhaler - 2 puffs twice a day, saline rinses twice a day (which the doctors feel is very beneficial to everyone as it helps fight off illness), Veramist nasal spray in the morning, and xopenex rescue inhaler as needed. In addition, Drake is to use allegra as needed. Because his two biggest allergies are rag weed and dogs (all furry animals need to be avoided), the doctors feel that he does not need to be on allergy medicine every day because he may not come in contact with those 2 things daily. (although he is also allergic to dust and mold) They feel that the saline wash and Veramist will suffice. He is to start on Allegra August 1st until the end of rag weed season, and take an allegra 30 minutes before being around animals. The doctors recommended that he not stay overnight in a house with animals. Good to know! Oh, and we learned something interesting about an allergy to dogs. The allergen itself is in the dog's saliva and sweat glands, not in the fur. Kaid was pleased to know that he does NOT have reflux! That is good news! Beyond the medicine, we are to do breathing exercises 10 times a day for 2-3 months and with each cough. We are also working really hard to make sure they are getting plenty of water and good nutrition. Overall, this was an amazing experience. We feel fortunate to have had the opportunity, and hope to use what we have learned to help others. The kids look and feel better, which is so refreshing to see! We sure love these kids and rejoice with them in their blessing!

I just want to thank our family and friends for all the encouragement, support, and prayers. We met so many people along the way that helped make this a very memorable experience. It was a joy to be the first to give Todd and Kimberlee a baby gift. Praise the Lord and thank you!

The Robinsons

Monday, February 2, 2009










We had the most incredible news today! When we arrived at Jewish, Kaid and Drake's lower lungs were working at around 55%. A few days ago, they started using their bronchodialater (advair). We have noticed from their peak flows that it was helping a lot, but we weren't aware of just how much until today! After their breathing test this morning, Dr. Elizabeth had a shocked look on her face. She leafed through their charts, and told us that she is confident that the medicine in working! Kaid's lower lungs are now working at a 109%, and Drake's are at 92% Praise God! That is a miracle. Those are numbers that we never would have imagined possible! We believed that the Lord would improve their health, and He did!


The kids had their last art therapy today. I asked the therapist what her degree was in. She is a professional artist, pottery being her specialty. She has a bachelor's degree in psychology with a minor in art, and a masters in counseling. It's amazing how she combines therapy and art. Drake made a coffee cup, and Kaid made a cheeseburger out of clay. They painted them today, and the therapist was going to put them in the kiln afterward. They will be packed and ready for them when we get to the hospital tomorrow. In their class, there was the most adorable little girl with her parents. They were really great artists, and made an entire heart shaped tea set. The little girl has been in and out of the hospital for months, and has been so sick. Her parents were thankful for their art session, because the little girl had so much fun! It was neat to be a part of!
After lunch, we took a quick tour of the Denver Mint. Kaid was particularly interested in going, as he is a coin collector. Before the tour, we were in a museum type room. It had the most amazing bible time coins. They had the type of coin that Judas Iscariot would have received for betraying Jesus. You know when Jesus said to give to Caesar what is Caesar's? They had that coin. They even had the type of coin that was referred to when the poor woman gave two small coins, which was all she had. How cool is that? At the Denver Mint, they only make coins - no bills. In fact, they make 2 million dollars worth a day! We got to see them make pennies. They sure don't let you see much of the building! Because they don't let you take your camera, I snapped a picture of the kids pointing at the building from our parking lot. That's kind of a bummer, because it's so pretty from the front!
We made it back to the hospital in time for speech therapy. We never would have imagined our kids requiring this service because they talk normally. The tests done this past week showed that Kaid and Drake suffer from Vocal Chord Dysfunction. Basically, their vocal chords are trained to close when they shouldn't. This can cause them to cough too much, like when they smell something strong, like a candle or perfume. It is also the reason that Drake can't catch his breath when he laughs. As many of you know, Drake has a hard time laughing hard when his asthma is flared up. It causes him to cough and choke, and becomes a dangerous situation. The speech pathologist explained how asthmatics tend to breathe wrong in an attempt to get more air. I'll try to explain. When a baby breathes, you can watch it's tummy go up and down. That's how it should be done. Asthmatics tend to puff their chest and shoulders up to take a deep breathe. While they get the sensation of getting more air, in reality, they are constricting air flow. To fix this problem we need to retrain their vocal chords. So, we learned a breathing exercise to do 10 times a day. Here's how it works. They will take a big breathe in , with their mouths open, for 1 second. Next, they purse their lips tightly, like they are trying to hold a penny between them, and blow out for 3-5 seconds. They do this for 5 breaths. This is also to be a first reaction to coughing or any asthma sympton. If it doesn't make them feel better, then they are to take their rescue inhaler. Because their vocal chords are hypersensitive, they can cough more then necessary, which can appear to be an asthma attack, when it's not! In fact, she said that many kids come to Jewish thinking they have asthma, when all they suffer from is vocal chord dysfunction. This can be corrected with these exercises, but we are to do it for 2-3 months! And, when they are sick, we are to start all over, and do it another 2-3 months!
We are anxious to get Kaid's reflux results tomorrow! After the kids' breathing tests in the morning, we will be dismissed and head home! It will be nice to sleep in our own beds tomorrow night!







Sunday, February 1, 2009







We enjoyed a hospital-free day with our friends, Todd and Kimberlee. We met them at their church, then had lunch at Red Robin. Afterward, Kimberlee and I spent a relaxing afternoon chatting at their house. Todd treated Jon, Kaid and Drake to an afternoon in the mountains. They went off-roading in his Jeep Rubicon. They had such a great time!
When the boys returned, Todd shared his photo album from his trip to Africa. The boys just studied Africa in school, so the timing was perfect! He had some really awesome pictures, and it was just fun hearing his stories.
We watched the Superbowl together and had some yummy food. It was a really fun and relaxing day! We didn't miss the hospital one bit!



Saturday, January 31, 2009




Kaid had a good night, and slept well in spite of having the probe in his nose. In fact, he was used to it within a couple of hours, and it was really no big deal.
Jon and Drake got to the hospital around 9:00 this morning. The boys both had great breathing tests. Drake blew a 297 and Kaid blew a 416. If you haven't noticed the trend, their numbers are way better than when we arrived. I just got to thinking, I'm not sure if I mentioned that we are doing an out patient treatment program. We are only at the hospital from 8:00 - 5ish.
Our day consisted of hanging out at the hospital until it was time to have Kaid's probe taken out. We went for a short walk outside. There is a fast food restaurant across the street called "Good Times." We walked over there to get milkshakes, but they weren't opened yet. So, I made up for it by serenading my family with the "Good Times" theme song. Then I shared my JJ impressions, you know, "kid dynomite!" and "chello!" Yeah, well, they enjoyed that just as much as you can imagine!
At 3:00, Kaid had his probe taken out. It came out easily. The hardest part was removing the tape from his face! Ouch! We're not sure when we'll hear the results, probably on Monday.
We spent this evening shopping at Target for church shirts for the kids, eating at The Black Eyed Pea, and swimming at the hotel. Jon and I felt like we had a date of sorts! We relaxed in the hot tub while the boys swam and carried on in the pool.
Tomorrow we plan on meeting our friends, Todd and Kimberlee, at their church. Then we will spend the day with them and watch the Super Bowl together.
On Monday, we will check in at the hospital for a breathing test, then go to the Denver Mint for a tour. Afterward, Kaid and Drake will meet with a speech therapist to learn some breathing exercises to help cut down their coughing. Currently, the plan is to be dismissed at 9:00 on Tuesday morning.


Friday, January 30, 2009












Our first big event of the day was a meeting with a clinical dietitian. She interviewed Kaid and Drake for over an hour, asking about the foods we eat. As their mother, this proved to be entertaining as well as painful. The boys just couldn't think of anything that I make for dinner. Hello? I cook! Drake said we sometimes have frozen pizza. My sister can back me on this one - we very rarely eat frozen pizza! When she asked what vegetables they liked, Kaid mentioned peppers, and Drake said, "I like pepper on my macaroni and cheese!" Not quite the pepper we were talking about! The point of the meeting was mainly the consequences of steroids on the boys' bodies. Kaid and Drake need more calcium than the daily recommended amount because steroids can cause your bones to become thin and brittle. So, they need 6 servings of dairy a day - so we will not be switching to soy like I had planned. It's ok, I was just wanting to give them the healthiest diet possible. She gave us a lot of advise on how much of each food group they need. Basically, it's more protein, low salt and fat, and lots of fruits and vegetables.
A crew from the Today show was following a patient here today. We could be in the background of some of the interview - eating our lunch. What a claim to fame! It will air on Tuesday, and is featuring a boy named Max who has allergies to peanuts, coconut and sunflower seeds. They were doing a food study on sunflower seeds - which means they were giving him controlled amounts of sunflower seeds to eat to see if he had grown out of the allergy. His mom sure hoped so, because she said that it's not a commonly labeled ingredient and that he had been accidentally exposed twice already. Drake and Max played Wii together today, and he is a sweet little boy!
Kaid and Drake had exercise tests today. Again, that means they jogged (or walked if winded) for 12 minutes, stopping every 4 to check breathing. Before Kaid started, he blew a 436! That's a great number! As soon as the 12 minutes were over, he blew a 408, and within 15 minutes - with no inhaler - he blew 436 again! :) I don't have Drake's numbers, but I know that when he did the exercise test the other day, he dropped 16% with the exertion. Now that he is on his new medicine, he only dropped 9%. We'll take that!
Kaid couldn't eat or drink from 10:00-2:00 today to prepare for his ph-probe. That means that he couldn't even drink during his exercise test, which was at 1:00! At 2:00, a child specialist (someone who's job is to make yucky procedures less awful for kids - it's a college degree) took Kaid to a room to explain the probe to him. First, you get a huge squirt of saline up each nostril, then a huge squirt of lanocane, then a long tube. There is nothing pleasant about it. He cooperated, but hated every minute of it. After the tube was in place, it was off to x-ray to make sure it was properly located. It was, so they secured it with tape to his face and gave him a computer type backpack to carry around. On it, he charts when he eats, sleeps and coughs. It was an extremely unpleasant couple of hours, but he is now a seasoned pro and handling it well. He can't eat fruit or drink fruit juice except for bananas, no gatoraide, and no koolaid or pop because the acid will throw off the test results. This is testing for acid reflux, which can present itself as asthma - and can even travel to the nose and sinuses to cause trouble for you. He wears it for 24 hours, so he and I are staying the night at the hospital tonight so they can monitor him. The picture of him shows him making the sign language letter "a" because he had just talked to Amy Rose on the phone, and that was his shout out to her! Thanks for the call, Amy!
At 3:00, while Kaid was painfully trying to swallow his chocolate milkshake, our doctors came in for our clinical - which just means to go over what they've discovered so far.
Drake's results so far:
They feel that he needs to pretreat with a rescue inhaler (xopenex) before soccer. He is to take his peak flows everyday (to see what number he blows) and know what zone he is in at all times. When he is in yellow or red (like traffic lights - you want to be in green - red is bad!) he should pretreat with the inhaler before playing outside, etc. His peak flows have been lower in the morning and rising during the day. While this is normal for asthmatics, they don't like it, and hope that his new medicine (advair inhaler - 2 puffs morning and night - and it's the medium dose, they have 45, 115 and 230, and they are both on 115) should balance him out. His test results showed that his body reacts really well to his rescue inhaler, so we thank God for medicine that does it's job. We believe God can heal through medicine. (Although don't get me wrong - we'd love the miracle of complete healing!!!) His chest cat scan was normal. The sinus scan showed that he has a condition called, "chronic mucosal thickening." Let's face it, sounds like thick snot. He suffers from this most likely from day to day exposure to allergens. The treatment for this is a nasal saline wash twice a day with Veramist nasal spray afterward. It's hard to believe, but they took him off of his allergy medicine (allegra) because they think this will work on it's own. His skin tests showed allergies to rag weed, alternaria (common soil mold), and dog - but they suggested he stay away from all furry animals.
Kaid's results so far:
His peak flows show a lot of variability that the doctors want to see evened out. Again, this means he blows better during the day than in the morning. His pulmonary function test and cat scan of his lungs showed air trapping. The is common in asthmatics, but not something you want. It's like his lungs are hyperinflated, like an over blown balloon. On the scan, some areas are darker. This can improve with time and they believe the new medicine will even this out. He isn't stuck with it forever, so we are praying that it will improve! He had minimal thickening in his sinuses, and no allergies! Isn't that great news?! Of course, he is to keep on top of his peak flows and know his zones. In addition, he is to guess his peak flow before taking it to become more in tune with his asthma.
On Monday, we have speech therapy to teach Kaid and Drake some breathing exercises. When Drake, especially, blows hard and long during his breathing tests, he tends to cough. They feel that the speech therapist can help with that.
Also on Monday, we are going to try to visit the Denver Mint. I told the doctors that Kaid wanted to go there, so they want that as part of his schedule on Monday. How nice! Well, I'm going to go whoop Kaid in some Othello now. Jon and Drake are probably in the pool at the hotel just missing Kaid and I!
The sticker charts in the photo above are used when the kids complete a procedure. When they fill them up (10 stickers) they get a prize out of the prize closet. Kaid got to go there today after getting the ph-probe put in. He got a hand held electronic game. They were told to choose a movie they liked, and that is the picture they put on top. Kaid chose Kung fu Panda, and Drake chose Rocky (one of the doctors said they used his body and Rocky's face!). This has been really fun for the kids, and a great reminder for us all. Those stickers and prizes didn't cost much, and were most likely donated - and they made a big difference in our lives. It's not the big things that matter. Someone gave a cheap game probably from a dollar store, not realizing the impact it would make in my son's day. Who knows, maybe they had been in our shoes. Either way, we appreciate our unknown gift giver - they took Kaid's mind off of his problems, if only for a moment. It makes me want to cry just thinking about it!


Thursday, January 29, 2009











Today started off with a cat scan of Drake's lungs and sinuses. Afterward, the boys both had their breathing checked. Kaid's numbers were low, so the doctor wanted him to use his rescue inhaler. Because of this drop in his numbers, the doctor wasn't comfortable letting Kaid have his allergy testing. (He'll have it tomorrow.) Twenty minutes after his inhaler, he went from 82% lung function to 108%. Again, this makes it clear that he requires a long lasting bronchodialater. What that means is that he takes a daily maintenance medicine - but the one he has been on is simply an inhaled steroid. This makes him need his rescue inhaler too much for exertion. A long lasting bronchodialater is an inhaled steroid as well as a rescue type medicine, which lasts 12 hours. This will prevent him from needing to use his inhaler so much. He won't miss it!
Drake had allergy testing, which he did not enjoy to say the least. He is allergic to rag weed, dogs, dust and mold. Thankfully, he is not allergic to any trees or grasses!
The kids had art therapy from 11:00 until 12:00. They really had a good time working with clay and talking about the procedures they were going to have done. Jon and I had a parent support meeting during that time. The pediatric unit has 6 patients a week that they are doing studies on. (They also have a triage unit that was really busy today.) All of the parents that are available from those 6 patients get together with a therapist. It was so enjoyable talking to parents that we can so totally relate to. One couple was from Sublette, KS. Their 5 year old had health problems almost exactly like Kaids, so we were able to share experiences with them. A mom from Madison, Wisconsin was there. Her 18 month old has exema and major allergies. This poor baby is allergic to peanuts, wheat, dairy products, most fruits, most vegetables, all beans, and eggs. Can you even imagine? I had to ask her what her baby could eat. She said she can have turkey, chicken, potatoes, sweet potatoes and corn - but she can only have corn if she takes it with benadryl. We were all in awe of what she goes through.
Before lunch, Kaid and Drake got numbing cream put on their arms for a blood draw. Unfortunately, they couldn't find Kaid's veins. They poked him twice, with no luck. He got pretty depressed. Drake's went well, but he did not enjoy it!
Next, we had pulminary function tests for both boys with a respiratory therapist. I went with Drake, and Jon went with Kaid. This is where they are in an enclosed booth, and were given allergens to breathe in to see how "twitchy" they are. Basically, to see how easily they are set off. We will get the results tomorrow. Drake thought this test was a blast! Kaid hated it - but after his blood draw failure, he wasn't in the mood for it. Poor guy.
Next, Kaid had a successful blood draw. He was so nervous about it, because he didn't want to get poked any more than necessary! It was quick and easy - probably because we remembered to pray first! God is faithful!
Kaid and Drake were introduced to their new medication, which is advair through an inhaler. They were taught how to use it, which was pretty easy.
Our physician's assistant briefed us on the boys' cat scans next. She explained that we would meet with the entire team tomorrow at 3:00. At this time we will have more details. So, what she told us was that Drake's lungs looked pretty normal, while his sinuses had issues - though not serious. Kaid's lungs had issues, while his sinuses were fairly good - nothing extreme. I would have guessed the exact opposite.
Since Kaid had such a rough afternoon, Jon said that he could choose our restaurant tonight. So, Taco Bell it was. Yum! We ate in the hotel dining room, and it was nice to be away from the hospital and relax as a family. I did laundry while the guys swam. For once, I did not pack enough clothes! We didn't think we'd get done this soon, but it was our hope all along. We told the doctors this, and they have done everything possible to make it happen. We can't say it enough - God has so blessed us with this opportunity! Good night!




Wednesday, January 28, 2009












Kaid and Drake's sleep tests went really well last night. Their oxygen levels were steady, so we woke up to good news from that this morning! And, we all had a great night's sleep. Jon woke up a couple of times when the nurse came in, but the rest of us slept right through the night!

Kaid's first test today was a cat scan of his lungs and sinuses. We should get the results tomorrow. They will be the determining factor as to when we'll get done. If no abnormalities are found, we will be dismissed by noon on Tuesday. That would be the perfect situation for us, because Jon has to be back to work next Wednesday. So, if that's the case, we'll stay the weekend, and come home Tuesday.

The boys had their lung functions checked, and Kaid's numbers were better while Drake's were worse than yesterday. In fact, the doctor said that Drake needed to use his inhaler, and we would not have known that. We waited 20 minutes after his inhaler, then his upper lungs functioned at 99%! That is a percentage we have NEVER seen before! Praise God!

Next, Jon and I saw Dr. Robinson, a psychothereapist. She talks to parents and kids to see how they are handling living with a chronic illness. The kids will talk to her tomorrow. She said we were normal! No comments necessary on this topic! Moving on... :)
The kids had art therapy while we were with Dr. Robinson. Kaid made a cheeseburger out of clay, and Drake made a coffee cup. For many of you this won't be a surprise. Drake loves coffee cups because his favorite drink is hot chocolate - with marshmallows and chocolate chips! The therapist talked to them about living with asthma. They loved it!
After lunch, Drake did an exercise test with Jim. I think he is a recreational thereapist. Anyway, Drake jogged for 12 minutes (which involved some walking!) with stops every 4 minutes to check his breathing. He had a 15% drop in his scores, which shows that his asthma was affected by the exertion. This tells the doctors that he probably needs a different type of medication. They will start him on that medicine tomorrow, then he will redo the test on Monday to see if it does the trick without premedicating with an inhaler.
We have a few tests that we know will be coming up, including allergy testing, bloodwork, Kaid's exercise test. In addition to this, Kaid and I will be staying overnight in the hospital again on Friday. He will be getting the reflux test, which consists of a tube down his nose for 24 hours. Drake already looks forward to stretching out on the big hotel bed all by himself! Jon probably does too, but he's not saying!