The Peace After the Storm

Will went in for his follow up appointment yesterday. He had been off the meds for 4 days when he saw the doc. No swelling or pain for over a week. The results of urine test came back normal. Doctor said "I think we are at the end of it." She mentioned that she hadn't seen HSP in years and now in the last 2 months she had 2 patients with it. She's thinking there must have been some virus this spring that caused it. The other family also does not have a definitive trigger for getting HSP either. We can speculate, but don't know for sure. The good news is that both her HSP patients did not suffer any of the complications or more serious symptoms associated with this condition. We will need to see the doctor in 2 months for another follow up.

So, now we can breathe a real sigh of relief! Thank God for taking care of us and sending angels to watch over us. Our eyes have been opened to see His love and strengthen our faith. All part of his plan, I'm sure! Nothing is ever by accident!

So, I'm signing off this blog for 2 months. I'll update after the next doctor appointment!

Still looking good

It has been 4 days now with no swelling and very little pain. His old bruises are beginning to fade. There are some red spots on his lower legs, around his ankles and feet. Will says his feet hurt a little, but it sounds like it is not as bad as before. We have cut back on his medicine and are thinking he will be off of it completely in the next day or two. If things continue this way, we won't need to see the doctor until next week.

What a strange, confusing few weeks! God has a plan and I am glad we don't know that plan. We would just mess it all up! Not only have we learned about Will's condition (HSP); we've learned more important lessons about the unconditional love and support of family and friends, and the courage and strength we have as a family. So, as uncomfortable and painful as it may be, sometimes it takes a storm to reveal God's blessings and perhaps to put things in perspective. God is so good!

Holding Our Breath

It's been 24 hours since any swelling or pain. Will even played baseball this morning. It's been hours and he is still looking good! However he still has some large bruises developing. He has one on his waist/hip area and another behind his knee. The bruises are painful looking, but he says they only hurt a little.

We have been gradually cutting back on the Neproxen. He is now at half the dose originally prescribed. If he continues to have no swelling, he may be off the medication completely in a couple days.

Crossing our fingers and continuing to pray!

Just a quick update....

Genitals are no longer swollen. Just purple in color.

Right ankle continues to be swollen and rash is more prominent there. New rash appearing on lower legs.

Going to try a new tactic to keep him from playing at recess. We will take his DS to the office for him to go in at recesses and play. We might need to buy a new game for it to keep him entertained. He wants to keep up with everyone and does not rest well. However, when he doesn't rest, his legs get swollen and sore. If keeping him in at recess doesn't work, we might consider sending him to school for just half a day.

Just when you think things are calm...the storm picks up again!

We have been dealing with swelling and rash that comes and goes for a while as you can see from earlier posts. We have been rather content to go with the flow. This disease has a mind of it's own. It is scary and frustrating! But, we find comfort knowing that God has a plan and He will see us through. We sang a great song in church on Sunday that expresses just what we are feeling:

He never lets go, through the calm and through the storm
He never lets go, through every high and every low
He never lets go, He never lets go of me.

Forgive me if the following information is TMI (too much information). Being a "googler" myself, I searched for some information and answers to ease our concerns when this new symptom developed and could not find anything. So, I feel it is important to post this information for people who are looking for support and answers for themselves.

Yesterday, Will discovered a red spot on his penis. He showed it to us and we reassured him that it was part of his HSP and it will go away eventually. About an hour later he went to the bathroom and it became a large purplish red spot and was beginning to swell. Another hour went by and his entire penis had swollen and become purple. He was still able to urinate with no pain. However, he was uncomfortable with underwear on and did not want to touch it. I think it was very tender! We took him in to see his pediatrician today and her reaction was that she had never seen anything like this before. So, she immediately called up to the urologist at the clinic and he agreed to "squeeze us in" (that's code for sit in the waiting room for a really long time). While we waited, the lab was testing his urine as it was darker than usual. It came out fine. We think it was darker because Will hadn't been urinating much that day, probably because it was a little scary for him to look at and touch. The urologist looked at it and assured us that it looks worse than it is. Easy for him to say!! So, he explained that all of this was on the surface. Nothing is impeding normal function. It should go away just like all other symptoms have.

As far as the patient goes, he is so brave. He stayed home from school today because of the embarrassment and uncomfortable nature of things. I think this latest symptom has scared him the most! He is taking it all in stride. I assured him that this was all normal and things will be fine. Thank goodness he trusts us and his doctor. It was scary to have to see another doctor that he doesn't know. Especially to let another doctor touch him and look at things. When we were done he said "that wasn't so bad!"

Thank you for keeping us in your prayers!

When will it go away?

Tonight we visited Aunt Kelly's baby puppies!

We have been decreasing the amount of Neproxen that Will takes as the doctor recommended a couple days ago. But his symptoms are coming back since we started doing that. Tonight he had pain and swelling in his feet. He is in bed with ice packs on his feet and ankles to sooth the pain. He also complained of a stomach ache, but we are hoping it is from eating salad and drinking juice at dinner. We'll see how he feels in the morning.
Thanks for your prayers!

Dr. Appointment

Will has good and bad days as far as symptoms go. But, overall, he's fine! He is happy, smiling, and active. He has a good appetite and all the symptoms he has are the mild ones that do not indicate any complications internally. Basically, he has the rash and swelling that comes and goes. I wish it would just go away altogether, but as long as he is not too bothered by it...it's tolerable. Anytime he complains about his legs or feet hurting, it seems more like an achiness than the pain he was experiencing a couple weeks ago.

He had a doctor's appointment yesterday and the rash and swelling were down from a couple days earlier. The doctor refilled his prescription of Neproxin, but we are going to try to gradually keep lowering the dose each time. If swelling and rash comes back, we'll bring it back up to the original dose. His urine was tested and we haven't heard back from the doctor about the results, so we will assume it's alright. The doctor wants to see him again in 2 weeks.

Tonight he has some new spots appearing. The good thing is that he has no swelling! God is good!

Update

So after a great weekend, Will went back to school today. When I picked him up he was doing well, still didn't want to play at recess, but was a little more active in his afterschool program. We had Open House at his school tonight along with his Spring Performance. It was a bit much for him. His legs and feet are swollen again, he complained of some pain in his legs, and the rash has come back more pronounced.

We had called the doctor earlier in the day and have an appointment scheduled for 2 days from now. He is almost out of his medication and we don't have a refill for it. We recently cut back to the original dosage thinking he was improving, but now I'm thinking we need to stick with the higher dose and see if the doctor will call in a refill for us.

On the mend

Will felt better in the morning and was able to play baseball. It was taxing on him, but he was able to rest after the game while watching his little brother play.

All in all, he's been great this weekend! His rash is going away. Some new spots are appearing, but not as horrible looking as before. Very little swelling, just some in his wrist and that right foot of his. No complaining about pain.

We'll be doing a follow up visit to his pediatrician this week. I'm sure all is well as long his urine tests continue to come back alright.

God is so good, all the time!