Surgery for Corbyn Postponed (sigh)

Well surgery for Corbyn is not happening today. This morning he fell in his room, hitting his head, knocking him out. Because of this we are now being sent to the ER for evaluation. At this point we don't know what they will do, other than the normal heme/neuro eval.

Yeah one good thing... At least for now Corbyn has a normal platelet count! His icing infusion last week brought his counts up to 208,000! He has not had a count like this since before he was diagnosed with itp. Still surgery has to be rescheduled because he fell. We are heading home.

Right now we are waiting until the 17th when he is scheduled to follow-up with the peds dr for the ER visit. At that appointment we will have a much better idea as to when we will be sent to the neuro.

Feb, 9th Long and Frustrating Day...

Today has been a long and frustrating day...

First physical therapy was not in the pool and I was quickly reminded why I switched to aqua- not regular. I left hurting more then when I arrived. After PT I had just enough time to grab a quick lunch for both Zach and I as we were heading to his pulmonary/allergy appt. I like the dr, however, so far no answers for our son who randomly breaks out in hives and rashes.

The poor kid sat through 60 skin pricks, 16 just under the skin pricks and only reacted to the one he was supposed to. NOTHING else??? His lung function tests were good considering he has been coughing for months. Since he has been having to use his albuterol daily, his asthma meds have been changed. I do not remember the name of the new inhaler nor the new antihistamine. However, this antihistamine is supposed to help with the mucous and also help with his random hives. Well since all skin pricks were negative, we had an order for blood work. Good thing this was much easier and faster than the allergy testing.

Then on the way home from the appointments, some guy decided that he just had to drive like 60 mph in a 30 mph zone causing the driver in front of me to slam on her brakes. I was not quite fast enough and left a dent in the hood of my friends car. ARG!!!

Finally home... cleaning out my friends van so we can return it to her (dent and all sigh..) and as I was releasing the backseat to fold it down, the force of the springs caused the seat to smack me in the face. Right away I know something was wrong when I went to lift my glasses and they were stuck to my upper lip???

Yes the van seat smacked me hard enough to cause my glasses to get jammed into my upper lip cutting it deep. I had to bend the glasses badly out of shape just to remove them, and get pressure on my face. Poor girls were freaking out. Jade had called dad, and Celidah was ready to drive me to the ER right then glasses still stuck. Thank goodness, Frank was literally minutes away.

Yep... my night ended with Frank taking me to the ER. In the end I got 3 stitches and got cut by my glasses in a way this local ER had never seen before.

LOL I guess when things seem to have a "quiet" moment, something must happen to liven our day.

My face before the stitches...

Feb 5, IVIg Infusion

We arrived a little after 8 on the 5th for Corbyns infusion then waited for it to began at about 9:30. His infusion ended and we were finally cleared to leave at 3:30.

Finally once done we headed to the airport to grab a friend and her daughter as they were arriving around the time he finished. The timing will be just about perfect as by the time we arrive, their luggage should be be ready for them.

Corbyn prepping for minor surgery

Corbyn... Next week, Corbyn is getting his adenoids and a T-tube that was placed in her ear when he was a toddler. The other one fell out like it was supposed, but this one has stayed put. The ENT removing the tube in his ear said that T-Tubes are typically placed as long term tubes to help in severe infection cases like Corbyn has as a toddler. However, she has NEVER seen one that has stayed in place for for over 5 years. His has been in there for about 11 years now.

The hassle we went through just to make this surgery possible. Oh my goodness... I knew that kids with blood disorders typically did not have surgery of any kind unless absolutely necessary. The process required to have this surgery approved through his heme has been insane.

Feb 3, blood draw for platelet counts
Feb 5 IVIg infusion (6 hours at Johns Hopkins)
Feb 9, blood draw for platelet count (if to low emergency admit for overnight IVIg)
Feb 10, blood draw, platelet count, if high enough, green light for surgery, if to low, red light, reschedule surgery, go home
Feb 12, after surgery IVIg infusion

Thank goodness all blood counts can be done locally through labcorp, but everything else we have to drive to Johns Hopkins for.

Zach has an appointment to see the asthma/allergy dr on Monday. In preparation for this appointment, Zach has to go off all the antihistamines he is on. Right now he is on 4 or 5 different meds to try and keep his hives and rashes under control. At this point this point the only things we know for sure that he is allergic to are latex and peanut. Peanut causes his asthma to act up.

Zach is off to see the asthma/allergy doctor for both his idiopathic hives and a cough that we have seen the pediatrician about multiple times now over the past several months. We have tried so many things now to get his cough under control and clear it up, but we are now going on month 3 or 4 (at least) and his cough is not getting any better. So it is time to move onto the specialist. However, it the allergy testing Zach is worried about. Not all the little pokes and prods, but the prep before hand because he has to stop ALL his meds except his Flovent and Albuterol. Everything else is in the antihistamine family.

Poor kid is so worried about how itchy and miserable he is going to be this weekend and that by his appointment he will be covered in hives. Like I told him, if he is covered in hives, that is perfectly fine as he is off to see the perfect doctor for that.

I had the school nurse print off a list for me to take to this appointment for the school year everytime he has seen her so far for hives, rashes, cough, wheeze, anything relating to this doctor. She gave me a pile of papers 5 or 6 pages thick listing everytime he has been in her that she made a note. She did not make a note everytime he saw her just to grab a cough-drop.

So if you see Zach covered in hives or a funny raised rash, do not worry because he is off all his controller meds to fight back these rashes. He is very likely to just break out over the next week too as once he is able to start back on the meds, he will take a few days before he under control again... 0_o

I suspect part of the rashes he gets during the summer time are related to his Raynaud's. ....wondering if this doctor is familiar with this vascular disorder or not. I will for sure have information about mast cell growths. Because he is mostly affected during the summer when he is out in the sun with his funny wart like things that are not warts. We know for sure they are not warts because warts do not come and go like his do...

Busy week.... Jade

So far Jade saw the GI dr about how often she has been sick and throwing up this year. Turns out since she stopped dancing she has continued to loose weight and has not grown at all in nearly 18 months. So now her GI wants her calorie intake increased to just over 2000 kcals a day (we have been told to add 2 pedasure drinks a day to her diet again)...

In addition to the increased calories, they are going to do a barium swallow test to test for dysphagia or other swallowing issues. The GI is also ordering an upper GI (possibly a complete) biopsy workup to check for EOE or Eosinophilic (e-o-sin-o-fil-ik) esophagitis (e-so-fa-gi-tis). She is being tested for this due to the fact that she is most likely to throw up shortly after eating, feels her foods and drinks slide down her throat, and sometimes feels like they are starting to stuck.

Frank said at the appointment, when they mentioned this his first thought was, "oh great here we go again..." This is similar to what we deal with Ellie.

Jade saw dermatology for a wart on her hand and started the treatment. According to her doctor she may be lucky and need only 1 or 2 treatments, or may have one of the stubborn warts that requires many treatments just to keep it under control. We will not know until we return to the office in 3 weeks and have then freeze the wart a 2nd time and then see how it responds.

As a parent of both special and medical needs children, Sadly, I have a profound understanding of the struggles and fears many families face. The exhaustion, extra paperwork, phone calls, appointments, diagnoses, meltdowns, and in the mist of everything, the profound love we share.

As a special and medical needs mother, I know many families with either children, spouses, or parents dealing with complex medical issues. The biggest struggle I deal with right now is learning about another friend with a loved-one who has just, or is about to receive his/her Angel wings. While I know the individual will no longer be sick, or in pain, it still hurts knowing my friend and their family will hurt with the loss.

We have been very blessed with our youngest and her slowly increasing health. However, at the same time, as her health as slowly increased, I have seen many who were not as fortunate.

When Ellie was very young we had a young couple in our church who had a very healthy baby. Shortly after birth it was clear something was not right. Soon this little one was having massive seizures, and within a few months gained angel wings. During this time, I struggled a lot because I still had my child who was not supposed to have left the NICU, yet she did. She was defying all odds.

Over the next couple years, I would see the same scenario play out several times before I could accept that she was with us still for several reasons. 1) Ellie has a specific mission to fill and only God knows what that is. 2) As parents we were doing something right with her care as medically fragile baby. 3) Her desire, fight, will, whatever you call it to discover and meet her potential was strong enough to keep fighting against her weak body.

Yes, I still get very sad, cry, and wish I could remove the pain my friends and family members feel when they have just or about to suffer a loss. I remember the pain I felt when we miscarried our 5th child. I remember the pain the day I was holding Ellie in the NICU and she crashed in my arms, or the times she crashed while admitted during other stays.

I know the stubbornness and obstinance I felt when I was told to cancel the parties we scheduled for Ellie because she would not live long enough.

Well she is now 9 and very much a fighter still and showing she is up for the continued fight.