Saying Goodbye is Never Easy

So, my most wonderful, supportive, hardworking, dedicated daycare provider is packing up her truck today and leaving tomorrow for Iowa. She has been watching Jack and Julia for just about two years now. Oh, the memories. The odd way I met her. The seizure in 9-08 followed by her calling 911 when she couldn't reach me, the firetruck and the ambulance showing up to her house (where she had to still watch and control about 6 other kids amidst the chaos) to save my baby -mind you this all happened on the second day that she had ever watched Julia. I was SURE she would not want her back after that, but when Julia was back out of the hospital, I reluctantly called her, and she was waiting with open arms for her to come back to daycare. The determination she had to make a difference in Julia's life. The hours of support she gave to me when I thought I was going to lose it over the last two years. How do you say goodbye to someone like that? Well, I got her a nice card, and gave her a generous bonus, and a big fat hug and lots of tears. I will miss her dearly.

The interesting thing is, what brought her to this move to Iowa, was her experiences with Julia, among other things of course. But Julia had such an impact on her, that she decided to look into careers helping special needs children, and to help their families. And she found the perfect job, in Iowa, where her family is, and simply could not turn it down. I understand her decision 100%, and I am proud to say that, if not for Julia, she never would have thought about this as a career. If she can help MORE kids than just my one, and help MORE families, than just mine, then - GO GET EM Dawn. You are an amazing inspiration to me.

So, hard to say goodbye, but everything happens for a reason I suppose.

I found a new daycare provider who is so super excited to help Julia. She has already told me all the wonderful things she wants to do for her. She wants to get Julia "out" into the community more to learn how to function better in social situations. She PROMISED me she would get her potty trained - we will see about that one - but she seems determined. She has watched her the last two nights and said she had no problems with her at all and that they seem to have already connected. She is persuing her undergrad in education, and then plans to get her masters in Special Education. She has worked with many autistic children (older - in their teens - and she wants to get julia to a better place sooner than these kids did). She is a dream come true so far - she even called me yesterday while I was stuck at work, and asked if she could pick up a few things that she noticed we needed for the home and kids......really??????? Seriously?????? She came an hour early yesterday to help go through all the kids clothes and get rid of the too small ones, and she bought hangers to hang up and arrange the clothes that do still fit. She sat here happily til midnight until Shawn and I got back from his 20th high school reunion last night, and then stayed til 1am just talking about how excited she was to have met us! AND, her favorite restuarant is the RIO! Her favorite music is COUNTRY, and she loves going to all the concerts that I wish I could go to! A match made in heaven I would say....

So, hard to say goodbye to my longtime friend and care provider today, but so far, easy to say hello to someone new - it will all work out!

Susan

Amazing DAY!

So, the news from children's wasn't so great, but not horrible either. I had a conversation with Julia's Life Care Planner after her appointment which was reassuring.

Then I had three hours to do nothing....no kids....(well laundry, but that is relaxing for me), and I had three other FANTASTIC phone calls that I think are going to affect my future greatly! I am ESTATIC tonight and hope it continues...............God has his eyes on my family lately and I hope it all works out!!!!!

Just when you think you are sinking, prayer does work!

Good night all!!!!!

Susan

NeuroPsych Evaluation

We just got back from Julia's neuropsych evaluation - only took about three and a half hours instead of 4-8, so that was good. She was in FULL OUT tantrum mode when we (my mom, shawn, julia, and I) got there, so the Dr got to witness that part of it. While they did the testing on her, the Dr talked to us in a separate room about, well, everything. This woman was AMAZING. I am so glad to have been set up with her for the appointment. I think she will be an amazing advocate for Julia's case, as there are a lot of things the attorneys are not agreeing on at this point.

Good news and bad - good news first - Julia has increased her scores on the Mullen Scale in the area of gross motor function from when she was evaluated in November. Bad news, she has regressed in Visual reception, Fine Motor, Receptive Language, and Expressive Language since november. Well, we have been seeing it lately here at home and even school has mentioned it regarding the tantrums. So, there you have it. Basically she is functioning at 18-22 months....still.

So, not the best news today, but, hey, tomorrow is another day, and if we can get Julia going with some of the therapies this Dr HIGHLY recommended - primarily ABA therapy, she thinks we can get her higher. But ABA is not covered by insurance.....I have a little money saved up for her school, and could throw some at ABA for a while if I have to - just pray they will allow for this therapy in her settlement. It is pretty intensive behavior therapy - she suggested it be done daily - someone at school - and someone at home....that's going to be a pretty penny.

Well, keep her in your prayers, and may the government do the right thing by her.

Susan

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