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

People come, people go......

So, I had an interesting conversation with a good friend tonight about an email she received from her mother - judging her on how she is raising her kids and the values, etc, she is instilling in her children. She got her email, the same day I got my letter............

It is interesting how those (supposedly) closest to us bail sooner than those who see the situation from a different perspective. I have decided to just let it be.....

Had a nice dinner with Shawn and his mom and her husband - their car license plate was "K -Sera".....I had never noticed that before.....

K-Sera Sera.....I guess that is how it goes.

So, we lose some, but we gain many. I have met so many wonderful, strong people and learned so much from others through this whole journey with Julia. I have "lost" many who I never thought I would have in a million years during this journey, but gained SO MANY MORE to offset the number that have dropped off. K - Sera.

Anyway, Jack and Julia, people come and go. The important ones stick it out, as I always will for you!

Love you kids!

Mom

What a couple of days.....

Memorial Day, 10am, Julia hit herself in the eye with a book - crying all day long, put her down for a nap at the usual time thinking the sleep would do her eye good - she got up at the usual time, and the bawling began again. So I called the ER to speak to a nurse to see if it was imperative that I bring her in to be evaluated - her eye itself looked fine, but she had been rubbing so much she had a good "bar brawl" shiner going on. Waited an hour and a half - no return call from nurse, so I took her into my clinic and stained her eye myself to check for a scratch - sure enough....there it was. Got her some human approved eye meds we use all the time and put them in. She was great the whole rest of the night and the next day. Her eye is fine now.

Today, she walked behind someone on a swing and got smacked in the head. Bloody nose, but all ended up being ok.

I feel so bad for her. The simplest task - picking up a book, walking behind a swing - things a "typical" 4 1/2 year old would do appropriately - she does not understand. And then she gets hurt.

My heart breaks for her often. How is someone supposed to be there 24/7 to protect her - whether at school, or at home, or at the park, or daycare, or anywhere. I hope somehow she "learns" from these issues as a "typical" child would. I am so tired of hearing from medicaid that she is "close" to "typical" and from other people who aren't here on a daily basis. I just want her to be OK. I don't want her to hurt anymore.

Today was an exceptionally crappy day for everyone here - not looking for pity to those who read this and misunderstand - it just sucks sometimes.

Tomorrow is another day. Chin up everyone here!

Susan