Home...Finally!

We finally made it home on Thursday of last week and are slowly getting back to normal...whatever that is. Bailey has been doing well and we even made the trip to Tennessee and back with no repercussions. We ended up staying in Tennessee for about 9 days and enjoyed seeing friends and family for an extended visit. So many people have asked me for information on what the Drs. in Colorado came up with. There are some things that are unclear at this time and we are working on answers. They do not know why he wasn't born this way, why it happened out of the blue when he was 3, why it is so aggressive, why he blisters, why his adrenal glands haven't started back up on their own, and why he has the problems with the immune system. Hopefully some of the testing will reveal a few of these things, but here is what they think. They think that Bailey has a rare form of an already rare kind of eczema. It was more than likely caused by damage to his skin barrier. He was diagnosed by Vanderbilt with this from multiple biopsies, but it doesn't look like any cases of this form of eczema that they have ever seen. However, it does respond to some of the same treatments. They basically went forward with treatment, even though they weren't sure that it would work, and low and behold. It is working. They said that Nummular "blistering" eczema is a rare form, and Bailey's is even more rare in appearance and behavior of the disease. We are continuing the same treatment that we were doing at the hospital and have moved down to a lower level of care than when we left. He is still in the moderate category, even though to us he looks amazing. We will stay on this program until hopefully all of the redness fades. He now has NO open places and is feeling really good. He has to go to the Dr. in Orlando and here in PCB to show the Drs. his amazing progress. He is also enjoying his food choices and I can tell he is gaining a little weight. His diet was so restricted, it was impossible for him to gain. They were hoping to increase his calories and this has not been a problem. He is eating everything in sight!! (except for Pnuts) I will post some pictures in the next day or two so that you can see some before and after pics. Until then....it's time for another wet wrap. Gotta run!~

Denver Day 13 of Treatment

Today is the day we went home from Denver. It was our 14th day in Denver, but 13th day of treatment. So many good things have come from this trip. We are so thankful to everyone who made our journey possible. We could not have done it without those who helped us to raise money and those that donated. Our Sunday School (life change group) has truly helped us "change our lives". I love each and everyone of our classmates like family and our entire church and friends and family all over the country have gone above and beyond...thanks to each one of you!
We woke up at the crack of dawn on Saturday morning and finished the packing and cleaning of our room at the Ronald McDonald House. We grabbed a quick breakfast from a drive thru (haven't done that in years!!) and headed straight to the hospital. We did our last soak and wet wrap and finished up all of our wet laundry. We said our goodbyes to the wonderful nurses and staff. They have been wonderful these last two weeks.

 Immediately after he was out of his wrap, we headed for the Denver airport to wait for our first flight. We got there two hours early and made the flight with no problems. By this point, I was already tired from cleaning our room, packing, checking out, bath, and wet wrap. I don't think I was prepared for a 3 hour flight, a 2 hour lay-over, and another flight after that. It was a looong day!

We made it in to PCB around 8:00pm and Chris was waiting for us outside. Bailey sure was happy to see his daddy. I think Chris was amazed at how good he looked and felt. So far he has not had a flare since returning home. We are working on making sure everything in the house is allergy-proof (most already was) and working on getting in a routine here at home like we were at the hospital. It is very important to train him in a routine. We have tons of medicines to get filled so that we have everything we need at a moments notice for a flare, or if it is time to "step down" on some of his meds. We are also working to get him seen this week by his local Dr. and the Dr. in Orlando. We have to meet with them to go over his treatment plan and catch them up on his success so they will know how to treat if we call or go in for a visit. Denver is wanting him to come back for a follow up visit at some point so they can document his progress as well. I told them not to hold their breath. We may do a virtual visit over the computer. Flights and arrangements are just too expensive. We will definitely stay in touch as much as possible though. They did give us 24 hour phone numbers and contact info for all of the Drs. I hope to put up some new pics in the next couple of days. He is feeling so good. He has wore shorts and short sleeves the last couple of days, which is a huge step for him. We are pleased with everything that has happened these last couple of weeks and continue to see amazing progress daily!

Denver Day 11

Yesterday was a long day full of testing and dr visits. We started the morning off with Dr. Abbott (the immunologist) and two of his assistants. They came in with info on two different studies that they were hoping to have us participate in. It required a blood draw from each of us, but could lead to lots of more studies on cases like Bailey's. One is for here at National Jewish and one is for Baylor University in Texas. They are going to basically run our DNA and see where Bailey's "code" is messed up in the area of immunology and skin. They can keep in touch if things are found and let us know of any abnormalities. If Baylor agrees to pay for everything, they will also be testing Chris and especially Kirsten because she is a "non-affected" sibling. It won't really do us much good at the moment to know what is causing it...but it can always lead to treatment in the future for Bailey or for other people with the same thing. They will also be running a panel on us to find any other diseases that we may have in the future. I find this especially scary (and I almost don't want to know), but if we are going through all of this, we might as well know and be prepared. It took me forever to fill all the papers out and ask a million questions. Hopefully, something good will come from this. There has to be a reason that our family and Bailey has dealt with this for so long. I hope that what they can learn from us can help.
After the tests were complete, we did our first soak and wrap and they got his vitals for the day. Dr. Darr (child psychologist) came by to see him and took him for his biofeedback and relaxation exercises. She is helping him learn to relax more and be able to deal with chronic pain and frustrations of being "sick". He enjoyed today's visit much more and got to the next level. He was super excited that he had mastered the other. :) He talked Dr. Darr into coming again on Fri so we can do it together. He wants me to see him do it. It requires "mind control" of his breathing, heart rate, etc. He finds it amazing that he can control these things.
When he was out of his wraps, we had some lunch and started on our milk challenge. We were worried because he often vomits when he has milk. He tested VERY allergic to milk and cheese. We have had to avoid the milk products since we had been here. Usually, he would do fine with his cheese, it is usually just the milk he had trouble with. When they started the test, they gave him a tiny cup, we waited 20 minutes and then about 1/4 cup. Another 20 minutes went by and we tested vitals and breathing. All was good so we test two more portions (1/2 cup and 1 cup) and waited two hours. He passed them all with flying colors. They think maybe lactose is his problem with milk and we used lactose free milk. They said he can have any kind since he passed the protein fine, but if he has aggravation with the milk, use a lactaid product to help his tummy. This is fine with us. He has come away with eating anything he wants except peanuts (we didn't challenge these because of anaphylaxis in the past). He is fine with this. He doesn't care for peanuts anyway! While he was doing his challenges. The nurse brought in a present that Nana, Pop and Kirsten had sent. He was so excited. He got a look and find book, A Colorado mascot candy dispenser, and a KIT KAT which he hasn't had in so long! He was tickled.

We were able to talk with Dr. Naomi and Dr. B this morning and afternoon. I had a total breakdown at the thought of leaving with not many answers. They have assured me that they will help us through the healing process and try their best to keep him healed up. I feel I need more answers, but there just aren't any. I know they are doing all they can. They are leaving the option of immune suppressant medication on the back-burner as a last resort, as well as PUVA. They honestly believe that when his skin heals and stays that way, his immune system should drop on its own and stop the cycle of break outs and blistering. I am hoping they know. They haven't really saw a case like Bailey, so I don't know what they are going on. Trying to have faith and trust is hard.
When we left the hospital yesterday, we decided to run to 16th st one more time to look for some shirts for the family. I wanted some that said Colorado or Denver and I have had a lot of trouble finding some. I found a great deal at a little shop next to Marlowe's Restaurant and we also ran to H & M to grab bailey a pair of shorts. He hasn't wore shorts in about a year. He was excited to buy some bright orange shorts and a shirt that had a storm trooper from Star Wars on it. The little things make him happy I guess :)

We went back to the Ronald McDonald house and packed up some things that won't fit in our suitcase (mostly prizes from the hospital and arts and crafts projects) and carried them over to the UPS store to send back home. We returned to the RMH and grabbed some dinner from the sweet folks that were cooking. They made chicken and vegetarian enchiladas and black beans. I thought it was yummy, Bailey.....not so much. I made him a bowl of ramen since he hasn't had any in so long. He wanted more when he was finished. He said they just might be better than the spaghetti O's. ;)
By the time we cleaned up after dinner, it was time to head back to the hospital again for a soak (and tonight was bleach bath night) and a wet wrap. We got him all fixed up and headed home for bed. Thankfully, Friday night should be our last night here in Denver. We will be heading home on Sat around 11am. We should make it back to PCB around 8pm. It will be a long day. I worry about keeping Bailey's skin in good condition while traveling. Prayers that we can make it home and go straight to the bath. The next few weeks are going to be like bringing home a new baby that requires round-the-clock care. Have a nice FRIDAY!!

Denver Day 10

 Day 10 of treatment here at National Jewish went pretty well. We managed to get in school work, some art projects, meet with Dr. B and Dr. Elizabeth, have a time with child psychologist, two wet wraps with soaking baths, and a food challenge to sesame. Staying in this room is getting really old and we are ready to head back to Florida. However, I have few reservations about leaving because there are so many unknowns. The drs still can't tell us for sure what is causing most of Bailey's problems, so without knowing the cause, all you can do is treat the symptoms. Treatments on his skin are helping, but they aren't sure that they can get him to a clear point past where he is. They are hopeful, but can't guarantee that this will work forever. Talks of cyclosporine and future PUVA treatments are still on the table at this point and I am so scared to leave not knowing how to take care of this. They say that they will stay in touch and I can call, text, or even email when we have questions. This makes me feel a little better, but still....Please be in prayer that their treatment plan will be just the thing he needs. We also are going to need to go to Orlando more to the dermatologist or find one that is a little closer to home.

Later in the afternoon, we went by the park to try out his boomerang that he got yesterday. He really enjoyed "trying" to throw it, but we are gonna need to watch a few youtube videos I am afraid. It is much harder than it looks. :) It was so windy and chilly, we could only stand it for a few minutes. I think we were out there maybe 10 minutes and we were frozen.

At dinner Bailey had some Spaghetti o's and meatballs. He has been wanting some forever, so we just so happened to find some in the pantry at the Ronald McDonald House. It was a perfect dinner for him! He experienced a little chest pains during dinner and we had to take a little break, but we think it was heart burn from all of the weird things in his diet. He has had wheat for the last couple of days and today of course, was the sesame seeds. He had to eat a LOT of seeds. After a few minutes of laying down, he was ready to go back down and eat the rest of his yummy spaghetti o's. As soon as supper was over, it was time for a trip back over to the hospital. We got ready to get him in his next soak and wet wrap. I snapped a few photos of his skin to share. I am hoping to have some nice photos of before and after next week. The hospital set up a photo booth in our room and have taken photos of him along the way. I think they are going to share them with me so we can see the difference.

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If you had seen his skin before, you know it was really open, often bloody, crusty and lots of different textures. Now we are down to only a few tiny "holes", which they think are the large open sores where they were the deepest. They say these will close in a few days, as this is the area that was the deepest. They are hopeful that the Purple/redness will fade and his skin will continue to smooth out. All signs of infection are gone and without any antibiotics. They say that 80-90% of bacteria is washed out and flushed away by the soaks and wraps. As the skin heals, there is not as much space for bacteria to live, so it often moves on and leaves. He will continue the bleach baths 2x per week to help keep any germs off of his skin. He is still very sensitive to bacteria and allergic to most strains. Keeping him away from bacteria is impossible, but keeping his skin healed should help with any infection or dangerous reactions. Our care plan will help us keep his skin in good condition so that it can heal slowly and healthily. Wet wraps are not so fun, but as you can see, he really makes the most of it. The sweatsuits help keep him warm and mobile instead of having to be all wrapped up for hours. He can go to the bathroom, play, and move around the house. In the wet wrap below...we soaked for 20-30 minutes in warm, clear water with NO cleansers. We then apply a thick layer of a high-dose steroid on all of the affected places and then apply Vanicream ointment AROUND (not on top of) the steroid. We soak men's tube socks in hot water and apply a wet tube sock to each leg up to the upper thigh and each arm to the shoulder. Next, a dry tube sock is put on top of each wet one and then dry underwear and sweats. The sweats are thick enough to keep him from feeling wet and protect furniture, etc. When his torso is back we can wrap his body by also using wet cotton pjs under the sweats to cover that area. If his head gets places that won't go away with cream, we have an option for wrapping his head as well. Fortunately, he doesn't have this problem right now. Thanks for your prayers and for all of those that helped us get here. Without you, none of this progress would be possible.

Denver Day 7

This pic is in the large park near downtown. It is from the area where the Museum and the zoo are located. Think of it like a smaller central Park. Love the snowy mountains in the background!

Well, today once again started out bright and early at the hospital. We got there a couple minutes before 8am and went straight to our room. We ordered breakfast for Bailey and got the bath process going. He did a bleach bath today to make sure any germs are gone and soaked for almost 45 minutes. After his soak, we got him all wrapped up and in the bed for 2 hours. While he was wrapped, I used that time to feed him breakfast and we worked on school. I was his hands for both, of course, and we managed to get all caught up for the upcoming week on his school (he got a day behind at the beginning of the week when we first got to the hospital).
After he was out of his wrap, I carried some of his laundry down and got it in the washer so we would have plenty for the next wraps of the day. His nurse came in to look at him and is pleased with his progress. She said we could skip the midday bath as long as he applied some lotion at the museum...this please him to have the whole afternoon. She also thinks there is a possibility of staying longer, but I will have to talk to the Dr. in the AM.
We headed out a little before lunch and went over to the Denver Museum of Nature and Science for the afternoon. We had a wonderful time looking through the museum. They have beautiful exhibits there. I took a ton of pictures (and so did Bailey), but the camera is in the trunk of the car.  Bailey refuses to let me go back down and get it. He is super sleepy and doesn't want to walk down there or stay alone in the room. I will post a few of our pictures on tomorrows post. :) Bailey said his favorite part was the dinosaurs and the mummies (even though they totally creeped him out).
For dinner, a Korean group of ladies came to the RMH and cooked a yummy supper. Bailey said that it was no where near as good as aunt Linli's food. I tried to explain that Korean and Chinese are a little different, but to him, Asian is all Chinese I think. ;) He said even Linli's rice is better. They were very sweet ladies and they made a spread. They had Korean beef, a vegetarian stir-fry with vermicelli noodles and veggies, a beautiful salad with a sesame dressing they made, and fruit. I appreciated a nice meal tonight. I feel like I have either skipped a lot of meals or eaten junk or granola the whole time. I think in the last week we might have had 2 really yummy meals.
After dinner, me and Bailey took a ride into downtown and I drove slow and let him take pictures of buildings and things he found interesting. Denver is such a different place, he found lots of things to take pictures of. We also found a couple of places that we would like to visit. They have a really nice aquarium that we hope we might can squeeze in maybe just an hour or two to try to visit one evening before they close, and we also heard about an area just outside of town near the mountains that has a natural hot springs. He is wanting to ask his dr. if we could go there one day. I told him we will see. We are starting to run out of time. We should leave on Saturday unless our dr. tells us we need more time tomorrow.
Overall, today was a great day. He laughed, played and danced around all day. He told me several times how good he felt and he was in a really good mood. Tonight when he laid down, there was no pacing the room, no crying and no needing massaging. This is a first this week. He is usually itching and hurting because of the wraps he has to sleep in. He says they itch his skin. I am guessing it is probably the strong meds inside that give him the itchy, painful feeling. Tonight, he actually fell asleep while I was typing this out. Watching him sleep makes me so happy. He is peaceful tonight and not in pain. I am so thankful to each and every person who has made this trip possible for us. I can never repay this gift. Even if we don't get everything we were (and still are) hoping for, know that you gave him hope and some ways of managing this horrible illness. That makes it worth it to me. I still pray that we get more answers and come away with clear skin and no more pain. On that note....I wish you all goodnight! Love and Hugs to everyone!

Denver Day 5

Bailey finally got a halfway decent nights sleep last night. We put 400MG of Ibuprofen with the sleeping aid to help him rest and not hurt. They say when we sleep, our body heals, so they want him to have as much sleep as possible. This is how I found him when I got out of the shower this morning....Doesn't even look comfortable.

Most of today was all about the wet wraps. We didn't have any appts today other than the Dr and lots of wrapping. We worked on some school during the time we would normally be doing art, psychiatry, or classes. The Drs were very excited about his skin today, but they want to see him over the weekend instead of waiting until Monday. They said they would love to monitor him, so we will definitely go over early in the morning for first wrap, then they are letting me take him to the zoo until late afternoon. He is really excited about going to the zoo! We get in free thanks to the RMH...so that makes it even better if we can't make it to stay a long time. The only other major news today is they have him off of any milk (includes cheese, butter, etc.) He tested high in the prick test, the puddle test and his blood work. They said hold off until next week when we can do the food challenge to make sure. They want to quadruple check to make sure it doesn't flare his skin or cause any reactions. He was NOT excited about this at all. His diet is so limited and he has a hard time eating as it is. I told him to be patient. I think some of his food problems will be gone by next week. They seem pretty hopeful that they may can give him wheat next week. We shall see. Tonight we were spared from another meal off of the hospital tray or taco bell (what I have ate almost every night) and we went to Udi's over near the hospital. It was delicious and the have lots of gluten free options for him.

 Today they also let us go outside again after lunch as long as he was rubbed down with tons of cream. While we were outside, Bailey found a friend....or two.

It kept trying to get closer to him...lol

 Not too long after, another came to join in the fun. They were making me nervous. I could just see one jumping up on him.  :)

 He was in a really good mood, and let me snap a few pics of him...which is rare. Usually all I hear is "MOMMA! STOP!"

His hair is pretty crazy. He refuses to let me cut it at all. He wants it long. So I say, LET IT GO...I am not gonna stress anymore about it. One thing this visit has taught me is let go of those small things. It's really not important. Am I gonna still probably ask him every once in awhile if I can cut it??? Yea, probably so. ;)

He REALLY wanted his picture with this statue...for 3 reasons he said: 1 because its cool, 2 because of the sign behind it that says, "we never say never" (he finds that encouraging) and 3 because the entire family in the statue is naked and he found it incredibly funny. I spared you all by taking a shot from the "backside"...lol.....YOU ARE WELCOME!

Denver Day 4

We got a little more sleep last night after hours of pacing, massaging his legs, and holding him. He managed to stay in the wraps until around 1:30am. We woke a little earlier this morning and went straight to the hospital to get started on the days routine. This morning we met our new nurse for the next 3 days and we also met Dr. Naomi our other PA that job shares with Dr. Elizabeth. They came in to examine Bailey and get caught up on our visit and Bailey's progress. Dr. B came in while Bailey was in his first bath and examined him... and I cornered him about my visit with Dr. Abbott yesterday. He apologized for the confusion and said that they did talk yesterday and decided that what the immunologist told me was a little incorrect. He was hoping for that second opinion, but he said immunologists often want to get to the source without helping what is ailing the child. He feels there is no danger of a major heart condition because he had been in hospital several times, in and out of drs all his life and nothing ...that would be of concern. He said they could monitor his heart if it made them feel better. His pulmonology tests all look good and no signs of breathing issues other than his history with anaphylaxis. For now...they are going with nummular Dermatitis which is what his the biopsies at Vanderbilt concluded, but they didn't believe because it looks so different. He thinks it is much more severe due to his immune responses...he says your skin is your first defense against things your immune system can fight....if his immune system is going overboard, it could be causing a larger reaction with the skin barrier. This is not official yet, but this is his initial thoughts before all the tests come back. His hope is to repair the skin "barrier" and in turn decrease his immune responses.The last few days have been very painful for Bailey and we aren't so sure why. His skin is looking better, but he is hurting worse. Maybe from the healing or maybe not knowing how to feel good. They said kids with chronic pain can sometimes get confused when they start to feel better all of the sudden. He went with the Psychologist this afternoon and did some biofeedback exercises to cope with the pain and calm himself when he is hurting or anxious about the pain. She said she will continue these until he can master them over our stay. Art therapy brought lots more activities and movies for him to watch while he is wrapped and we went for a walk outside the hospital to get some sunlight and fresh air.

Later in the afternoon, Nurse Lauren came in and did his skin prick tests to environmental allergens and lots were positive allergies. Most we already knew. Much to his dismay, he is still allergic to cats (sorry Todd the cat, no chances of you coming inside...that is what he was hoping for). They said we need to really make sure everything is allergy proofed in our house. We have always done this, so this isn't new either. The only thing that we might need to work on is getting rid of carpet. They also got back blood work today from food tests that were done yesterday and said even though most of his pricks were negative, his blood result to milk was very high. They will be challenging this next week to see if it is a real allergy or a fake response due to the over-active immune system. He also will challenge peanuts and sesame seeds along with wheat.

Bailey working on art while his test is finishing

His back at the beginning of the test...some whelped up quickly

Nurse Lauren getting his test started while he played his DS

We finished our day with bath 2 and lots of meds and a trip to the prize closet for a new toy as a reward for all of his hard work. We came to the RMH for a couple of hours to work on some art projects and eat some dinner. We are packing up as I speak to run and do the night soak and wet wrap back at the hospital. Pray for sleeping meds to work tonight, sleep for both of us, and healing for his little body. Love and miss you all!!! (especially my Kirsten and Chris!!! <3>

Trip to the prize closet for a toy and $110 for helping with a study on kids with severe skin problems.

Denver Day 3

What an emotional roller coaster we were on today. We got to the hospital bright and early excited about the progress we are making. We were up a lot last night so that last time we woke up, we went ahead and packed our stuff for the day and headed on over. As soon as we got to our room we went to do all of his vitals and nasal wash for the morning. Our nurse, Bradley, told us that the cultures on Bailey's skin came back positive for MRSA and they were not really surprised with the number of open places he has. They said 1 in 4 kids that come the skin clinic have it because of this. Unlike Vanderbilt, they do not plan on an IV to get rid of the bacteria...they plan to take away the MRSA's place to live by clearing his skin so it can't live there anymore. This was a good answer for me because I know that Bailey is resistant to most antibiotics from over-use in the past.

Dr. Elizabeth came to check out his skin while he was soaking for his 8am wet wrap. She was impressed with the amount of progress he is making and told him he can go to 2 wet wraps and one dry medicine wrap a day, but they called in a stronger steroid cream to speed up the healing process. He also doesn't have to wrap his torso anymore unless he flares...now just his legs up to his groin area and his arms up to his shoulders.


Setting up for morning wet wraps

Resting in his wraps

Child life brought him some more art projects and a wii console to keep in the room to keep him from getting bored and to keep his hands occupied. We painted and made some sand art in between people coming in and out.

 

Dr. B our main dr came in and said that after reviewing more of Bailey's info, he really believed that Bailey has a severe form of eczema that is made worse by the immune system issues. Even though it looks nothing like it, it behaves similar and responds to similar treatments.

 This was really good news until the Immunologist came in and took everything in a whole other direction. He felt that it is more a genetic thing, a pulmonology thing, or a heart problem (yes, heart patients can have strange skin problems....I had no idea). Some of the things that made him think some of these is the blisters (which are not typical with eczema), family history of auto-immune, lung issues, etc. He is wanting blood work and an echocardiogram to rule some out and is figuring out how he can also get blood from Kirsten and Chris to rule out genetic things as well. This kind of knocked my feet out from under me and took me back to that initial feeling of having no idea what to do. We HAVE to get some sort of answers from this visit. I have a horrible helpless feeling. If they can't agree, I don't know what will come of everything. I am trying to keep positive, but I am so tired and miserable, it is really hard at this point.
Later in the afternoon they did his first round of skin prick tests on his back to see what his allergies for the first rounds of foods are. For the first time ever, he only had two. This doesn't mean that it is final by any means, but now we can challenge and see if he has a reaction in a controlled environment. The only two that showed up is pnut and sesame seeds. This is crazy to me. The very first time he was allergy tested, he reacted to almost everything on the tests and had over 20 food allergies. He has been avoiding gluten for years in the past and recently for almost 2 years and has tested positive to it at least 2 times even in blood work. He is hoping that they will challenge and he will pass so his diet can be opened up more. The nurse also came by with some news of his immune system work up. We knew his immune system was way over active, and they have ruled out hyper-IgE syndrome, which is great, but his immune numbers are at an all time high. Most kids with a "high" immune system top out around 200. His was 17,500 the last time it was checked in Ft. Lauderdale. Yesterday....wait for it....it was 44, 000. Yep, 44,000! I was floored. They said that with the amount of skin problems, they are not surprised. It is not the highest they have monitored (but very, close).
Late afternoon I decided to go to a class for parents and Bailey took a little nap while our 2 loads of laundry were washing at the nurses station. Soon after, we left for the evening and went to find him a gluten free pizza and took it back to the RMH to eat and play a game in the kitchen area. We washed our sheets to see if that would help him sleep better with his own detergent and went for a ride back to the hospital for soak and wrap number 3 at 8pm. I am not comfortable with doing them at the RMH in a non-sterile environment, so we made arrangements to go back at night for this so he can use HIS tub in HIS room that is clean and sanitary. We got him all wrapped up and headed back here for bed. I gave him his sleeping meds to help him rest so he can sleep in the wraps all night (or as close to all night as possible), but the meds are not kicking in even though we have doubled it from the first night. He is not resting, but tossing turning and crying because he is itching and hurting. His skin looks better so I just wonder if it is burning and itching because he is healing and there is new skin on his "places" that are normally sores?? I don't know...but I know he is miserable. I am hoping for a good night's sleep for us both so we can handle the day tomorrow. I have been holding him and massaging for the last hour as he cries.
Please be in prayer...I know we are only on Day 3, but in my mind, I see time slipping by without concrete answers. Please pray that they can work on this and agree on diagnosis, treatment, and care for him.
UNTIL TOMORROW.......

Where has the time gone?

Ok, so Spring officially arrived and has brought with it MANY BEACH DAYS! We are really enjoying our beach time. We had a wonderful Easter and celebrated with our new church family. It was definately weird not being back home with family for our traditional dinner though.

This is the kids on one of their last days of school work for the year. They were soooooo excited to be done for awhile. They really worked hard these last few weeks.

Melissa ready to head to Scampy's for some seafood.

We have also had some visitors!! We have had Nanny and Poppy, Nanny and Nana, and of course, The Jenkinators.

Kirsten out in front of our house being goofy!

Ready for an evening ride!

 We are so glad that it is summer and ready for a visit back home. Hopefully, July 13th we will be pulling up in TN for a two week stay with family and friends! Hope everyone back home are doing well. Love to you all!

No news is good news, right?

Well, once again, I am the blog slacker! I never make any promises, but I do try to keep you updated. We are all doing lovely and spending lots of time outdoors. Between the parks and the beaches, we spend most days outdoors. We finally finished our schoolwork a couple of weeks ago, so the days are now much more fun around here. We have been working on some projects, educational games, and watching lots of movies. That's my favorite kind of day. Much more relaxed than usual.
Bailey is doing great and healing nicely..thank you so much for all the prayers and we continue to hope that he will get a little better everyday!
If you get a chance this summer, come down and give us a visit, we miss everyone dearly.

It Springtime!

Finally Spring has arrived!~

Of course, most of our winter here felt like Spring already...it's kind of like we have jumped into Summer. Easter is at the end of the week, and oh, how we are gonna miss being with family this weekend. I have got a ham to cook, and we are gonna dye some eggs, but we are gonna miss the family gatherings and egg hunts. Instead, this week we will spend most days at the Marina Civic Center for the Panama City Passion Play that is put on by our church. {go HERE for more info.} It is a very LARGE production. Kirsten will be participating in the performances on Thurs, Fri, and Sat night. She is very excited to get to join in. Chris and me and Bailey will be spectators each night. :O)

Our homeschooling is finally winding down for the year and we have less than a week left to go. The kids are very excited to be finished and have lots of time for bike riding and swimming. We have been going to beach about once a week to try to get Bailey some water, but he really needs more than once a week. I can't wait to be done with school, so that we can just stay out there all the time. He is still looking quite a bit better and we are still only taking claritin and singulair....this is probably the least amount of meds that he has ever taken. He has also been seeing my chiropractor here on the beach. She is a wonderful lady. She found that he had some pinched nerves in his neck, so she has been working on getting that corrected for him. It will take awhile to see if there are any improvements to his health. She says that all bodily functions and illnesses can be connected to your spine. So we hope that this correction could maybe help his overall health. {fingers crossed}

Chris job is still going well and his travel is slowing up a bit {thank goodness}. He has started walking with some of the men at work and he has invited several of them to church at St. Andrew. We are hopeful that they will come for a visit.

So, I guess that is it for now...things are pretty much normal and boring...LOL. {that's the way I like it} Enjoy your Spring!!!!