Whew – what a year! Yep, it’s been just over a year since we moved from Charlotte, NC to Saint Johns FL! Crazy doesn’t even begin to cover it! I am happy to report that O has been doing great and has been released from all his various doctors! Whoot whoot! Turns out that they feel his arthritis was illness induced and no reason to think he should have any future problems! After a month of gluten free he seemed to be free of stomach aches so he’s now back to eating gluten and doing fine. Placebo effect or not – who knows but I’ll take it!
I’m planning on ramping back up this fall with some family photo sessions now that our life has some resemblance of normalcy! Yay! So to start things off I’m going to honor national photo day with a little post featuring some dear friends who were all dressed up for his Navy commission. That 4 o’clock Florida sun made for a very short and quick session but a successful one all the same!
Hopefully more to come soon. Wish me luck! It’s hard to rebuild!
Well the cardiologist appointment went very well and O’s heart looks great – just a false positive from the EKG so YAY!!!! The nephrologist (kidney specialist) we saw in Gainsville gave us all on clear on his kidneys and verified that he did not have lupus and told us the key words we needed to use to get into Rheumatology (joints/bones/autoimmune specialist)! Apparently you CAN NOT mention HSP or they will keep sending you to nephrology – you have to say joint pain!!!!!!!!!!!!!!
It took us several months (yes I called every morning to see if they had any cancellations) but we finally got into pediatric rheumatology! We had a good visit for the most part. She watched him walk/bend/run and pressed all over his legs and feet and knees. She found that he is favoring one hip and walking a bit funny, that he has flat feet and that he has some muscle weakness when he bends (his knees bend in toward each other vs straight ahead) and that he has tight achilles with pain when squatting. She took x rays of both feet and ankles and we are waiting to be scheduled for an MRI on the feet and ankles as well. She is looking for arthritis/inflammation though she says his symptoms are not in keeping with the typical arthritis since his swelling comes and goes and does not have a “hot” feel to it. She is thinking that maybe his tendons are connected to bone? In the meantime she would like him to do physical therapy to help strengthen his muscles. She feels that the month of not walking (he didn’t walk for 4 weeks during the beginning of HSP) and then the following months of little to no activity (he missed 44 days of school – some of those days he did go for a few hours but came home early) and sitting in a recliner or bed has left his muscles weak.
Gluten Free – out of desperation I decided to give the old gluten free a try again. Since let’s be honest, I didn’t try very hard/very long before. If I’m being honest with myself – I don’t want it to have any effect on his health and I don’t want him to have to eat gluten free. He’s been through enough already! After several weeks of gluten free – I have to admit that he is doing better than he had previously. Could this be a coincidence – sure! But it’s the easiest (ok – not that easy ) and least side effect thing we can try right now. He still gets some abdominal pain but not as severe and the headaches and joint pain have gotten better. We let him cheat a bit this last week and it didn’t happen immediately but that evening or the next day his stomach would hurt (keep in mind he hasn’t had bathroom issues to make us think he had any food intolerance)….sooooooo…..why not just keep the with the gluten free for now.
Overall – all but one Dr. says that his abdominal pain, joint pain, headaches and swelling are not from HSP but that HSP possibly triggered some other autoimmune disease. We disagree since he basically had no health issues before the HSP. The GI Dr. still wants us to do an endoscopy and colonoscopy but we are skeptical since O would have to be completely put under anesthesia and we almost lost my mom in December to a “routine” colonoscopy. We are still weighing the good/bad of this recommendation. They mostly want us to do it to rule out other possible issues but we would have to put him back on gluten for at least 2 weeks before the scopes so they can test his tissue for gluten issues.
Until this morning we did not have a full family history from my husbands side of the family. After contacting his Aunt we learned that my husband’s mom had arthralgia (form of arthritis) at age 13 but was treated and recovered. Unfortunately her father at the age of 17 (my husband’s grandfather) had a sports injury followed by 3+ weeks of high fever that turned into the beginning of his battle with debilitating juvenile rheumatoid arthritis of the spine, shoulders, hips, and knees. This caused him to spend lots of time at Johns Hopkins (and included two metal rods in his spine) – a battle he fought off and on for the rest of his life. I’m trying to not freak out and go down that rabbit hole – trying to be patient and see what the Dr. has to say from his xray and mri. Unfortunately it will take several weeks to get in for an mri (apparently it takes a long time to get insurance approval) and then they only review mri’s twice a month 😦 We are stuck with the waiting game for now (and some physical therapy!).
If you are a parent with a child going through this – keep a log of EVERYTHING! Try to get and keep copies of all recommended procedures/dates and lab results. Each time we see a new Dr. they seem to not have all the lab results or information so I’ve started trying to keep everything in a binder. This is like a job – trying to get all the forms and records from each provider and they aren’t easy to obtain half the time but it’s worth it – this has been a long journey and we are STILL trying to get all of my son’s lab results in print. They will ask you for dates of when each lab was done and what labs – like you are a tech and have any clue what these lab results are! It’s hard and frustrating but the more organized you can keep your information (think timeline too) – the easier. I find that sometimes I forget to mention something to a Dr. because I forget myself!
Thanks for taking the time to read this super long update!
Since I last posted, we have seen the Gastrointestinal doctor who ordered all sorts of tests for O. Last week he completed an upper GI barium x-ray along with a complete abdominal sonogram of all his organs. He also did stool samples for all sorts of things like parasites, h-pylori, blood work for pancreas and everything has come back normal with exception of an EKG that was done. The EKG was only done because a medication the GI DR. wanted to use required it. The EKG came back with a possible Left Ventricular Hypertrophy (LVH) so we see a cardiologist next week to follow up on that! I’m trying to not get to worked up over it since apparently EKG’s can give false positives and we have no family history of LVH.
Today we travel to Gainesville to see another Nephrologist. We were not allowed to see the Rheumatologist we were hoping to get into. Apparently the Rheumatologist will not see us unless the nephrologist deems us worthy 😦 So frustrating!!!!!!!!!!!!!
He has now missed over 5 weeks of school 😦 Luckily our school year ends soon and even though he doesn’t feel well – he’s pretty content when he’s home.
Hey there everyone! Sorry I have been so quiet lately. The move of course has kept us crazy busy but along with that – my 10 year old son was diagnosed with Henoch-Schönlein Purpura or HSP (a form of vasculitis /auto immune disease) for short in early December. I can’t even begin to explain how crazy this illness has been for poor O! I’m writing this to help others out there find some much needed help and resources. Although HSP only effects about 13 in 100,000 – there is little information to help the parents and patients! So – here is our story (sorry – long post but parents dealing with an child with HSP – it’s helpful to know exactly how things went for each case)
In early December O (10 year old boy) was complaining of abdominal pain and his underwear had been leaving marks on his stomach. In general he just didn’t seem to want to play much either. We just assumed it was food related or a bug and that he had outgrown his undies! This went on for a week or so until the abdominal pain had him bent over in pain. We gave him advil and the next morning he seemed to be doing better. That Monday Dec. 7th – he went to school, returned and went on a playdate. That afternoon he was complaining about his legs – it looked like he had gotten himself into a bunch of chiggers! We went on with our evening but the rash/chiggers (so I thought) kept spreading and went all the way up both legs and onto his buttock. Both my husband and I thought maybe it was something like chicken pox?????!!!!???? So off to the Dr. we go on Tuesday. We noticed that his feet has started to swell as well.
Dr. diagnosed him with Henoch-Schönlein Purpura and sent us up to the children’s hospital for blood work. In that short period of time – his feet had swollen so much that I had to carry him on my back from the parking lot to the hospital. Thank goodness, though he was scared, he was in good humor and we tried to make it fun… though getting blood drawn is absolutely NO FUN!
So begins the nightmare of the next 4 weeks. We were told that HSP lasts 4-6 weeks and just keep him comfortable with advil/tylenol and lots of rest. No one prepared us for how awful it would be! The abdominal pain was so intense that he would just whimper and cry all bent over, the swelling was obnoxious and moved around about every two days – starting with his feet, hand, wrists, elbows, knees, ankles, lower back, head, TESTICLES and lower back. We went on Dec 8th up the the children’s ER with swelling on his lower back (he couldn’t even stand up straight!). Luckily the Dr. had some experience with HSP and was helpful (funny side story – the er nurse asked him to rate his pain on a scale of 1-10, 1 being a paper cut and 10 being Jesus nailed to the cross…. such and odd thing to say to a child!)- in the end we did an ultrasound to make sure it was just edema (it was!) and he sent us on our way with a script for Tylenol with codeine (this was an absolute sanity saver! He got so much worse from there and I don’t think we would have been able to keep him from going back to the hospital without this!). For the next 4 weeks we kept his legs elevated as the rash/purpura (it’s not a rash at all but leaky blood vessels) and swelling were so bad that he didn’t walk for almost 4 weeks. The tylenol with codeine helped with the abdominal pain (usually got worse at night) but we also gave him benedryl to help his fall asleep. We used a cortisone cream on the purpura that eventually got scabby but was often itchy and we used a heat pack on his abdomin. Also the rash/purpura moved onto his arms and belly and face and he also developed nose bleeds around 2-3rd week with blood shot eyes. He also had very foamy urine (make sure to check their urine and poo for blood).
On top of that – we purchased and did daily pee checks – this is VERY important as HSP can effect the blood vessels of the kidneys as well as the intestinal lining. You use the pee test to see if there is blood and protein present in the pee. It’s a super easy test and I highly recommend you get some to do at home. The Dr. did a weekly check as well for the 1st month and then monthly checks for the next several months. It’s also important to monitor their blood pressure to insure the kidneys are not in distress. The school nurse (if your school has one) and the local fire department can help you with this as well – keep a daily journal with all symptoms/treatments/blood pressure and urine results and take pictures! Keep them hydrated!
O’s urine ended up showing blood and protein in it around week 3 so we were referred to a pediatric nephrologist (kidney specialist) to help us monitor him. Basically he said that as long as the rash/purpura and other symptoms were getting better (at that time they were) that we didn’t need to do anything more than continue to monitor his urine and blood pressure. He may have another flare up in the next few weeks but that was ok as long as he didn’t get severely worse and to only use Tylenol since the HSP is now involving the kidneys (it’s not advised to use advil/ibuprophen when the kidneys become involved – ie blood/protein in the urine).
After the 4 weeks O did start getting better but would have various days were his abdomen hurt or his feet/knees would swell but overall doing pretty good until sometime around the end of Jan he started complaining more about abdominal pain feeling dizzy.
Feb 25th – Dr said he felt O was having a reacurance of the HSP and suggested we start 5 days of prednisone. We decided to put off the steroids for a bit and see if it would magically just get better! It did not. The next week he was complaining of nausea. Knees and feet swelled a bit after trying to run the mile in PE – removed him from all physical activity from school. (FYI – we ended up getting a form from the school nurse to put on file with the county to let them know of our ongoing health issue so that the county wouldn’t send us ugly letters about him missing so much school).
After a very mild spring break at the beach – O had some form of abdominal pain the entire week and just not a lot of energy. When we returned home we decided that we needed to give the prednisone a try because this clearly wasn’t going away on its own.
The 1st day on prednisone he was sent home from school – his abdominal pain seemed worse, severe headache and knee join aches. Next day – same thing – sent home from school within two hours. We go back to the Dr and they are just stumped. Usually prednisone helps in a very short amount of time so we have now stopped the prednisone. We did more blood work and now we are looking in various directions to make sure there isn’t anything else going on besides the HSP. We are going to a GI doctor and we put in a referral to a pediatric rheumatologist. In the mean time they have put him on a daily dose of Nexium and Neproxin (aleve for kids). He pretty much missed school all last week but luckily with all that rest – he is feeling pretty good this week (though we have resorted to using the pain scale of 1-10 to help understand how he feels each day)! I find that he seems to do worse after being active – even just playing in the pool or at the beach for a day -.
So – if your child has been diagnosed with Henoch-Schönlein Purpura – there are two groups on facebook that have been so VERY VERY helpful! AND KEEP A JOURNAL!!!!
Also – here is a link to the pee test strips: We used the 10 parameter (top option – it give you 100 test strips)
Also – I can’t tell you how much we have used this heat pack – it has been well worth the money and used almost nightly for 4 months now! We heated it in the microwave for 2 minutes.
When O’s pee was showing lots of blood and protein – I started giving him a multivitamin with fish oil (advise from another mom in the facebook groups) and coincidence or not – his pee went from +3 or more to just trace amounts of both blood and protein within a week (after months of +3 or more) – the dosage says 4 chews per day but I only give him 2, sometimes 3. They taste pretty good – not fishy at all.
Pray that we are able to get into the pediatric Rheumatologist in Gainsville soon – even though he is feeling better this week, he still has some form of daily abdominal pain and has missed over 3 weeks of school (would have been 5 if it hadn’t been for Christmas break falling right after he had been diagnosed). Sorry this post is so terribly long! Best of luck to anyone dealing with HSP! Its just awful!
Other general notes – we took him off cows milk, anything with food dye, only white cheese and while he was having kidney involvement we limited any processed meats like deli meat/ham/pepperoni/hotdogs, all dark soda (yes we allow our kids to have sodas as a treat on the weekends) as well and also tried to make sure all meals were fresh/not processed. We included good foods for kidneys like cherries and eliminated bananas etc. We even tried gluten free (though that was short lived and hard to do while we were also doing no deli meats). Overall the only thing we feel makes him feel notably worse is sugar/soda. I find it hard to keep a child hydrated – so during the worst of it we did 1/2 gatorade to water and finally we found some naturally flavored sparkling waters that he likes. Anyway – some other people have said gluten free helped them….something to try if you can/willing. Oh and we even tried the Bragg’s apple cider vinegar but he hates it! (well what kid is gonna enjoy taking a spoonful of vinegar! we even tried mixing it – no go and Bragg’s sells a limeade made with it – no go for him but I drank it and it was actually pretty tasty)
Feel free to email me email@example.com if you have questions/need help! Thanks for listening!
Yep – we are offering a new service! Since we moved I have yet to fully reopen my family and child photography business in Jacksonville Florida but would love to find a little something to fill my days while the kids are at school. I was asked by my sweet friend to help her with some of her vacation pictures. She needed me to photoshop out a tourist or two so she could frame her beautiful picture without the distraction. Sooooo that got me thinking. Maybe other people out there need a little help with their already awesome pictures! So we are now offering to pimp your pictures! We will edit them in a variety of ways depending on your need. Some options for the editing of your vacation or family pictures may be:
removal of an object
a general spit polish to give it that wonderful professional look
dodging and burning
help with framing or creating collages
professional printing on a variety of papers, wood, glass, metal
Please contact us if you are interested in this service since each job will be quoted individually depending on the scope. (ie. how many pictures, the type of edit etc). We are happy to simply edit and return digital images or print them professionally for you at an additional cost. Thank you for your interest and support!
Here are a few samples to show you what a little photoshop love can do for an image 🙂
Skin retouch (knees)
We printed this above image on a velevet paper and oh my goodness it looks just stunning! The sky with the white clouds – just gorgeous!
So people – hit me up if you need some photoshop goodness done to your own images! Or hit me up if you would like to learn how to do this on your own! I will be posting about mentoring opportunities. I will be offering photoshop classes (sorry – in person only at this time – I’m not that tech savvy) and general photography mentoring/teaching from beginner to advanced – depending on your needs 🙂
Some of you have been following me on my personal facebook/instagram and have requested to see more of our kitchen remodel images 🙂 So here you go! It was a lot of fun but a HUGE mess! I love my new kitchen though! Tanya with Roman’s Kitchen and Bath did a great job! We went with white shaker style cabinets, Cambria counter tops quartz in berwyn with a butcher block top on the island. The paint on the walls in Sherwin-Williams mindful gray (sw 7016). We chose white subway tiles for the back splash with a dove gray grout.
We also chose Kitchenaid appliances and I love love love the oven and microwave/convection oven as well as the dishwasher but I’m not so in love with the cook top. We were not able to get natural gas here so we had a propane tank buried in our yard. The grates seem somewhat far away from the flames and for some reason I can’t seem to get a low simmer going – so I am burning my rice! Maybe I can change the settings somehow? Not sure – I’m still trying to figure that out but for anyone looking – I loved my old GE profile cook top better (so far anyway).
Side note: we found those pendant light hardware in the attic – just put new glass on them! Kinda fun to incorporate something old we found in the attic!
We decided to add on a buffet/wine rack area to this previously unused area of the kitchen and I am so happy with how it turned out!
Counter top – Cambria Quartz in Berwyn (sorry – cell phone picture)
Before: (Don’t judge/cell phone picture..we had just moved in!)
So far I love the white cabinets though they do show dirt much easier and you can see the joint lines in the cabinet construction – the overall feel is that it made the kitchen look much bigger and brighter!
Oh my my! What a whirlwind of crazy over these past 6 months! Sorry I haven’t been keeping up with my blog – Facebook is simply faster/easier for quick updates. So the big news is that we have moved. Yep – we just up and moved to Florida! No real reason other than we wanted to be closer to the ocean and we wanted a different type of lifestyle for ourselves…… ie….taking the kids out on a boat on the ocean for example. So we did it. It was fast and crazy but we have settled now and thought I’d give a quick update 🙂 So far so good on the move! Sparky (our Boston terrier) hates the afternoon thunderstorms but other than that – we are really loving it! We’ve never had a home with a pool in the backyard so the kids are LOVING it! Who am I kidding – I love it too!!!!!!!!!!!
Other big news….. I turned 40 in January and my sweet hubby took me to Italy. For sooooooooooooooo long I have just dreamed of visiting Italy and I finally had the chance and OH BOY it did not disappoint! I loved this trip better than any place I have EVER been! The food, the scenery, the culture….sigh. I’m in love! I hadn’t had a chance to work on any of my images from the trip since we had been caught up in showing our house/moving etc so here is the 1st image I’ve worked on so far.
I love giving my business to family owned and operated businesses. I always feel like I get a more personal touch and they care more about your experience and customer satisfaction. So keep that in mind if you ever are in need of garage door repair. I would highly recommend Bob and Amber over at Ameriserv Charlotte. I can say with 100% confidence that you will love working with them and they will take care of any of your garage door repairs/needs. If you have any concerns or questions Bob even lists his direct phone number on his website so you can call and speak to him directly! That alone says a lot about how much your business means to him!
I can’t say enough just how much I love my Fuji X-Pro 1. It is just a beautiful camera that feels wonderful and a bit old school in my hands. It reminds me of the 1st 35 mm camera I ever used (it was my dad’s). I will admit though that it has taken me some time to really get use to this camera system but the pain has all been worth it. I originally bought it to see if I could use it as a back up system for my main Canon gear since I would prefer to have the Fuji around for more of my personal work and hoped it could pull double duty in that department. So far I have tested it out on landscapes and head shots and it has done WONDERFUL!….. so I thought I’d give it a go at newborn photography. Again thinking if I needed to use this as a back up system, would I be able to do all that I needed with this small mirrorless camera and the 35 mm lens and 60 mm macro lens. Well it handled beautifully! The 35 mm was a rock star! Produces beautiful images straight out of camera. I used the 60 mm as well for some up close baby features and it did very well but it was a bit hard to nail that focus (I find that macro lenses in general are hard because you have to manually focus for the best results). Here are some of the images from my session 🙂 If I had to complain- it certainly does not focus as fast as the DSLR system and there is still a lag between images that could drive you a bit crazy if you were trying to photograph fast moving toddlers.
Sometimes it’s hard to wait until the end of the day to do a family photo session. Little kids can get hungry and grumpy later in the day and it just takes a little more patience to wait until the sun is low in the sky to get everyone together and dressed for pictures but I’ll tell you that if you do… it’s soooooooooooo worth it. The sun is just so beautiful in the late afternoon and I think Chaeli’s family photos show this off really well 🙂