GREAT NIGHT!

Julia's pediatrician rocks...that's all I can say right now. WOW!

Great Day - and Eye Dr Appointment

So, this morning, Shawn took Julia to PT and Aug Com. He discussed Julia's behavioral issues a little bit. The PT recomends we do the botox again, as Julia's leg has started to turn inward more than when the injections were working. I guess we will schedule this again soon. I will be less scared this time, as I know the anesthesia is short, and she will be back to normal, other than a little grumpy for just a day or so. Shawn spoke with her Aug Com therapist about Julia refusing to use her talker and throwing it on the floor - and she didn't seem TOO concerned - as she has been showing signs of just being "mad" with more than just her talker. (terrible 2'S at 5?) Hopefully it is just a phase. I contacted the behaviorist - who does not take insurance - so this will have to wait for the settlement. We got a name from Julia's Aug Com therapist, from childrens in aurora, who does "free" consultations on behavior, so, if she doesn't simmer down, we will do this while she is out of school in august.

While Shawn took Julia to therapy, I contacted a homeopathic veterinarian in wheatridge. Actually I emailed her a couple days ago, but she answered this morning and gave me her phone numbers to contact her. I called and she was ready and willing to talk to me today about how I would start the process of the "transfer" from allopathic to homeopathic medicine. She described a "wall full of nasty vines, and spiders, and yucky stuff, covering a door - and that if you get the guts to open that door - you would never go back. I sure hope so. I still do not know how I would do this financially and timewise, but, hey, I have learned that everything does present itself at the appropriate time, and it WILL work out if I want it to. And I do. SO - in my mind - DONE. (How do you like that Howard and Mary???) :) This woman was amazing. Above and beyond what I was expecting.

Oh the eye dr - everything OK except a possible "left periphery issue" from her right sided brain injury (well, global injury, but primarily on the right). So, I was pretty happy with that.

Anyway, Julia's pediatrician will be here tomorrow night - he is going to make cookies with her and bring a Mickey Mouse CD. I called him tonight to confirm, as I had Julia in the car (never good) and she was screaming - and he said he will be here tomorrow and wouldn't miss it for the world!

How are all these awesome people showing up in my life right now? Oh, yes, God, or "the Universe", or whatever you believe in - stolen from Pam - "Believe -Prayer Works".

I LOVE TODAY!

Susan

Guess who's coming to visit?

My New pediatrician is just amazing. I took Julia in yesterday due to her being so "bipolar" after hours. He is in is "senior" years of practice, but still insists on taking calls. My helper, Trina, went with me, one - for moral support, and two - to tell him I really wasn't crazy about what I was seeing in her changing behavior, as she is here at least once or twice weekly, and last night she was ready to WALK.

Anyway, I got a call on my cell tonight around 7pm - thought it was the pizza guy, lost, so answered it, and it was my ped - calling again from his cell. He told me he has some of his rehabilitation classes in the springs tomorrow morning, but WANTS to come to the house on wednesday night, and watch Julia, by himself - with no distractions from family, to see what he can see and what he thinks is going on with her. No charge. No nothing. He just wants to do what he can to help. He even offered to bring Otter Pops - Julia's favorite thing ever! WOW. Can you imagine? I can tell you that I personally would not have the time to do this for any of my clients. What a guy. He has been practicing in Castle Rock for many many years and has the best reputation around - and now I know WHY!!!! Of course, Julia will likely be a perfect angel on Wednesday - as a change in scenery or people sometimes calms her down, but, even if he can witness ONE tantrum - maybe he can help.

I am so happy to have found this Doctor. What a great guy.

Will let you all know how it goes! Jack, Shawn and I plan on going to Toy Story 3 that night.....should be fun.

Susan

What a week....

Julia was put on a medicine for attention span about a month ago. At first we noticed horrible side effects when she was on a higher dose twice daily. Very tired. Irritable. Tantrums. I called the neurologist who said to decrease the dose by half, so we did. Only gave meds at night. Didn't see much other than her being tired after the meds. She slept well - as she usually did anyway.

We were instructed to increase the meds to a lower dose twice daily - morning and night - and WOW. What a nightmare. Normally she only really tantrums at home in the evenings - and they are usually "mild" (well, what we are used to), but they increased to ALL day long and the caregivers during the day started to question what the hell was up with her. When she went to Hippotherapy last week - the therapist said she seemed "drunk" and couldn't even walk the horse back in to do the brushing and feet, etc. I called her ped on friday and he told me to just stop the meds and get her back to baseline before we started something else - if anything at all.

Today was almost unbearable. She was FINE when she was in the pool, but in between - it was like she was bipolar. Happy and laughing and smiling - and the two seconds later - tantrums - throwing herself on the ground. NO consulation helping.

We put her down for a nap - thinking it was just the water and the sun - when she woke up - happy as a clam - then once we got home - horrible tantrums. Her caregiver that helps in the evenings was ready to walk out - but instead walked (drove) WITH ME to the pediatrician to make sure nothing else was wrong. I was kinda hoping she had a raging ear infection, but, no.....all ok - except her brain. He recomended either trying other meds (which shawn and I are afraid of) or a behaviorist. I sent an email out to a behaviorist to see what they say.....if they think they can help. Something has to change. The screaming and crying is out of control. I hope I hear back from her soon.

Meds or no meds...that is the question. I know meds help many, but know they all cause different issues with each individual. I DO NOT want to over medicate my daughter. The pediatrician respected my opinions, but did recommend giving her some time, and possibly trying another, as there MAY be one out there to help her attention span - and give our family some sort of "normal" or more normal life. BUT, if we have to go through this crap for months trying to find the right one - is it really worth it? Not just for all her caregivers and her brother - BUT FOR HER????????????????? I don't know the right answer.

I have been thinking of a change in my vet career to one of alternative medicine - so, why would I not consider this for my daughter? Well, I DO. But none of this is covered with insurance, and, well, my salary, Julia's school, my rent, my son, food, etc........are already putting me in the hole at least $500 - $1K per month. So,what am I supposed to do. Keep with what insurance will cover for now - but something has to give soon.

I love my daughter with all my heart - but even Shawn - with the patience of a saint - was at his wits end tonight.

Go MMR. I hope learning of Julia's situation will save at least a few kids from this fate.

It will all work out eventually - just have to keep on hanging on.

Susan

WHEW!

The Medicaid meeting went well, I think. Julia was there the whole time and showing her "true colors" (on a bad day)which I think gave the medicaid person a real look into what goes on here in the evenings. We talked about a lot of stuff, and the medicaid rep is going to give me some contact info for someone to help advocate for an appropriate bed for Julia - so we can hopefully get rid of the "cage". She was very polite and patient even though Julia was tantruming for the whole hour. We will keep our fingers crossed. I mentioned the in home health care service saying that Julia was "close to normal" and she just kind of shook her head and said she would talk to them about the situation. I asked her to talk to them nicely about it, as I am likely going to have to hire at least one, if not two more care providers in the near future and the home health care service has to approve it. I don't want a bad taste in their mouths when I call for the interviews with the people I find. I will give it a week or so before I call for the interviews. But, all in all, it went really well. Thank you GOD!

Susan

medicaid

Julia has her evaluation with medicaid tomorrow morning. Those who know, know how stressful this can be, as, because she can walk, they see her as "normal". Forget the inability to talk, for get the inability to affectively use her left hand, forget the hemiplegia and braces, forget the lack of using utensils to eat, forget the inability to bathe herself or get dressed without being placed on a baby table, forget the 10 second attention span, forget the diapers at almost five years old, forget no "stranger danger"......that's all normal, right?

God has been looking out for me lately (a lot) and I am hoping he will have time tomorrow morning to do the same.

Julia is doing great. Has a great weekend with grandma and grandpa and got to ride a "real" big horse....little did these people know she has been riding for over two years now! haha! NOW THERE, she may be ahead of the curve! Don't tell medicaid!

Good day, good night, and prayers for tomorrow!

Susan

Ophthamology appointment

I have scheduled Julia with an Ophthamology appointment on the 20th just to make sure Julia's eyes are OK, as with brain injuries, and especially those resulting in hemiplegia (one sided weakness) often affect their eyesight. My gut tells me all is OK with her eyesight, but I just want to make sure before her Vaccine Injury settlement comes through later in the year (maybe). If she has issues, they will have to cover this as well.

I am going to also schedule an audiology appt for the same reasons - brain injuries often affect hearing - and just want to make sure she is ok, and I think she is, before the settlement.

Trying to get all my "ducks in a row" before the final settlement....if she needs help, it needs to be documented.

Will let you all know how she does....

She did great in PT today - she actually hung and swung from a bar today! I have video and will post if i can figure out how......and to think three years ago she couldn't even walk....GO JULIA!!!!

We will get through this baby girl! And our education is WORKING!

Mom