Vindication Tastes Sweet

So, most of you know that I have been battling to get my son diagnosed properly. We had a blow to that process earlier this year, but that was trumped yesterday. I will take you behavioral psychologist and raise you a pediatric neurologist! I win! I know it seems petty, but when two (2) pediatricians with their own Autistic kids have BOTH said my son is Autistic and then this woman undoes all that with one report, it really irritated me. Especially when she notes some of his autistic behavior in said report, but no it is not Autism. It is Apraxia, something that honestly no one I have spoken to even knew about! 

Well, all this changed yesterday with our trip to San Francisco. We went to see a pediatric neurologist for Jeff because of the diagnosis of Apraxia. Which he does not have. He is Autistic and meets the requirements for being diagnosed as such. So, today with a letter from this neurologist in hand, I called the school district to get the process started. He has an appointment at 3pm there to be evaluated. 

Also, had to reschedule a WIC appointment because we were all so very ill and missed it. Which is that day but earlier. Charlotte starts her speech therapy on Monday and the Infant specialist is coming on Tuesday. Also, got her 2 years well check scheduled. Made a few other calls to get some information on help for a few things we need. Mike did well at his post office interview in West Sacremento today and now we are waiting on an email for him to get drug tested and his background check. We have to get Jeff some blood work done, some of it is genetic testing that is in depth so it will not be back for a couple of months. We are moving forward with all this stuff. Somedays I feel like I am standing in place though. I am so very tired and bone weary of most stuff going on. 

I missed counseling for 2 weeks because we were really sick and go back on Monday afternoon. I am so looking forward to that! I need to get back on schedule for my meds too because of nausea I had stopped taking them, so now it is time to start again. Right now life is busy and overwhelming. I need to run.. 

-Ciao!

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Sick

We are all sick (except M, he has an amazing immune system). He took Charlotte to the ER last night about 11:30 pm and they admitted her to the Children’s Hospital after doing 2 breathing treatments and she was not better. She had 2 before that at home, so the total was up to 4. They put her on oxygen. I stayed home with our son because well, we are sick too and honestly I did not want to spread this any more than we had to. This morning I made calls to our appointments on Tuesday and Wednesday to cancel. M just called a bit ago and once the attending doctor comes in and looks at Charlotte they will possibly take her off the oxygen and then the timer is on, with watching her be sure her oxygen levels are stable. They want to watch her for 12-24 hours then they will release her. Hopefully, by tomorrow or Wednesday, she will be home. This has been super hard on us of course. Jeff is not taking this lightly. He was recently diagnosed as mild/moderate autistic. So, I am working on some things for him. Not a great time to be sick! Gotta run! 

-Ciao!

Enter No Pain Relief…

Most of the people I have known for longer than 5 minutes know that I have suffered from horrible, painful, sometimes debilitating migraines. For those of you who do not suffer from these horrible things, I would not wish them on you ever. I finally got M to quit saying he has a migraine when all he has is a headache. He never understood the difference, he thought, like many do that migraines are just bad headaches. They are not. Migraine is a neurological disease. I am new to this concept myself.

I switched meds recently after a phone call from my neurologist on last Tuesday. He called on a day where I had a level 10 migraine. I could not focus on our conversation. I forgot what I had already said to him and repeated myself several times in the span of a five minute conversation. So, much so he wants me to get an MRI done to find out why my migraines have changed so drastically after the birth of my daughter, Charlotte.

Some days my pain is manageable. Of course my manageable and yours might be slightly different. I am able to function with pain up to a level of about 8.5 or so. Now, that does not mean I am doing things well. I am not, I am just barely able to get things done. When I am at this level of pain, my brain is in a severe fog and I will forget what I am supposed to do or even what I have done already. Even if it has been only about five minutes. For me, the brain fog is the worst thing ever because I pride myself on my memory and the ability to know what I need to get done. Some days, honestly, I can not remember my own address or phone number.

Some of my other symptoms of my migraines are: sensitivity to light, sounds, smells, and even it can hurt to touch me. Lately, I have been dropping things more than usual as well. Which kind of is a bad thing when you have an infant who can not get from one place to another without me picking her up and moving her. Those times, I take it nice and easy making sure I have her wrapped in my arms and not in my hands. I also have been more clumsy than usual , tripping over my own two feet more than normal, tripping over small things that normally would not bother me, and tripping over nothing essentially.

There are days that I make it through the day okay and I seem okay and then there are those days that I made it through the day and wonder how on Earth I made it through. We are supposed to go grocery shopping this evening, doing that for me depends on where my pain level is at that point. It is not unusual for me to not go at the last minute because my head hurts so bad I can not take it. Sometimes, I force myself to go anyway and those days are horrible.

I feel bad for my kids because most days I am not the fun mom. My kids are too young to understand what is going on with me. My two year old does know that sometimes mommy is in pain and he will rub my head to make me feel better, which makes my heart melt and breaks it all at the same time. Today I have to wash the comforters on the bed. It has been a while since I have done that. The problem is that the wash cycle is forty-five minutes long and I will forget what I was doing and it will sit and get all icky smelling.. so I have to try and focus on that. It is hard to do when you have two small kids needing stuff all the time..

Laundry is calling.

-Ciao!

Genetic Testing

Yesterday was one of those days for me. Jeff woke up way too early to see M off to work and then would not settle back down to go back to sleep. So, when the genetic testing lady called me at 8:30 am yesterday, I was awake wondering who in the world would be calling us that early?!? As, it turned out, it was wonderful news, my tests had results and they were negative. Which means that there is a low risk that baby Charlotte will have Autism or any of the other genetic disorders that we tested for. I was so relieved! I mean, there is always that chance, but since none of the other kids had those issues, I was trying to not be concerned about it, but I am 40 and things are different now. 

I hung up the phone and looked at Jeff and cried. Not really sure why, well yes I am, because I was relieved. Mostly about the other genetic issues we tested for not the autism, because as a friend of mine says, Autism is a super power! And she would be right! Jeff of course had no idea why momma was crying so the look on his face was priceless. It was also confirmed that we are having a girl! 

I am so tired today, but can not sleep right now. Monday is my doctor appointment and Tuesday is when M talks to the surgeon at the VA about a date for surgery on his knee. So lots of stuff going on in the beginning of August. I think I am headed to lay back down while Jeff is still sleeping.. 

-Ciao!

Migraines Are Not Good For Childhood

I was diagnosed with migraines when I was like 15 years old. So, I have been dealing with them for many, many years and tried a lot of different medications with some horrible side effects to get some kind of relief. Sadly, some would work for a while and quit and some would just plain not work at all. At once point there was a medication where you would take 2 pills at the onset of a migraine and wait for about an hour and if it is not gone you take another pill every hour until it is. Honestly, I was up to 15 or 16 pills. It was crazy!

I have not taken a prescription migraine med in about 5 years, mainly because well, I would just lay down in a dark, cool room and go to sleep and most of the time this helped. Of course this is pre kids. But now I am back to meds for relief because I can not just lay down when I need to and sleep.

I do have some requests in case a pharmaceutical company accidentally stumbles across my blog and actually reads this entry ( far fetched, I know!).  Please Mr. Pharma could you make a migraine med that will not put me to sleep. Yes, I know there are some that say that they are non drowsy but when I take them I am out like a light! Also, the last med I tried made me tired, have severe nausea , dizziness, and other assorted side effects. Could we leave those out too? See, I am a mom to a 1 year old boy who does not understand migraines. He wants to play and laugh and squeal with delight and when mom has a headache, she can not handle those things very well.

I know that these requests are long shots because medication affects us all differently. I get that, but honestly I am so tired of suffering with these migraines. Yes,  I have heard of the botox treatment for migraines and honestly that scares me to death! Putting a toxic substance in my body for relief of migraines and it does not even work on every one. No, thank you.

Excedrin Migraine works about 60% of the time if I catch the migraine in time, but if I wake up with a full blown one, my day is pretty much shot. Like yesterday. I had a bad one. Horrible headache, dizziness, light and sound sensitivities, nausea, the whole nine yards it seemed! I am a very lucky girl that I have a husband who understands and he took care of dinner last night for us.

I hate losing days like these because my son gets one childhood and I do not want him to look back and remember that mommy had migraines. So I am trying everything I can to fight back and get some relief! I am much better today, I can at least function. I still have the nagging low grade migraine, but I think it is mostly weather related.

Oh yeah, that is another thing, the triggers. Ugh. I do not have many and I am pretty good at staying away from those that I can control such as certain types of foods, smells, etc… My biggest and worst trigger is something that I absolutely have no control over what so ever. The Weather. I cringe when I see a rapid change in temperatures coming or the barometric pressure changing rapidly from one day to another. I know these things will bring on a migraine for sure. I do everything I can to avoid them, the weather is one thing I can not avoid.

I am hoping on my newest doctor appointment that we will be able to work towards a plan that will help me beat these horrible headaches at least for a little while.

-Ciao!