Overwhlemed!

From my last post, we All knew today was coming. Im an emotional mess.

The morning went well. Put all of Brielles "gear" on (Her Spio Vest, both orthodics and secured the shoes. Jealous of the average parent that can slip on a shirt and pair of shorts and shoes on their kid and out they go. Anywho, On our way to depere (about 35 minute drive) and Brielle ripped at her orthodics/sandals the whole way and got everything off by the time we arrived. Back to square one.

Get to the office, and they try to tell me I owe them $100 blah blah blah, I fought it tooth to nail and said that because we have private insurance and she has Medicaid on top of it, medicaid picks up all co-pays. They couldnt fricken understand that! I wasnt paying them a penny. I told them to call who ever their billing lady was and figure it out and I would pop back in when my appointment was over. She then proceeds to tell me that Brielles appointment "somehow" got DROPPED so she was never in the schedule. REALLY??? I scheduled this 6 fricken months ago! So we sat there for 40 minutes before they got all this crap figured out. A 21 month old, does.not. stay patient that long!!!! She came back and said they got new scheduling software so it probably got messed up that way and then billing came back and said we didnt owe anything, Just like I tried to tell them!! So frustrating when a business cant get their shit straight!

So now we get in the room, Brielle was being a complete sassy pants, as she had no attention span left because we just had to sit in the waiting room for 40 minutes. So she was literally beating on the doctors computer, pulling her diaper bag apart and flinging everything across the room, into everything she wasnt supposed to be and not doing anything she was supposed to be doing! Good thing Dr. Morberg was tolerant because by this point my patience were non existent! And Im forever grateful for her Physical Therapist, Lisa, Who is technically out on medical leave for surgery, that she came to the appointment with me.

Some of my "concerns" or frustrations more than anything, are her constant falling as I mentioned before. In the last few weeks she falls more than ever! She is getting mad and I dont blame her one bit. She fell 4 times in the first minute we were there, which then accompanied her fit. But I was happy that happened because they could see it. Lisa explained that because her hamstrings are firing so fast, she doesnt have enough time to recover from the fall when she tries to stand up and go at it again, which in turn makes her just keep falling. Makes sense. Dr M agreed without hesitation she was tight after she attempted to stretch her and needed botox, possibly phenol. She wants to start with botox for 3 months, if it works do one more round of botox and then go to phenol every 6 months if the first two rounds work for her. Typically by 2 weeks we will know the results of the botox. Some children even show great signs of improvement after 2-3 days. The majority of it will be in her left hamstring. And then some in her right hamstring. The botox can be done right in the clinic. The Phenol she will need to be put to sleep for everytime. Not excited!! This is my life. Its becoming more and more real. But I know that it needs to happen for her to lead a "normal" life! I will do anything for her look normal, act normal, walk normal, play normal etc. While waiting we seen a little boy, maybe 6, that has Right sided effected CP. You could see it in his step and in his arm. HAPPIEST little boy EVER! I loved it!! While it broke my heart to see the actual CP in an older child and think "Man, that COULD be us in 4 years" it melted my heart that he was so happy and loved all his therapists there and had to give them all "Five" before he left!

Sunday Brielle got really sick. Vomiting all over herself, dog, and dads truck. After I got thinking, when we got home from the retirement party (It was 78 here Sunday) and took off her spio vest she was HOT! This child was so warm and is always a hot box! She was in a crib at 3 lbs and I was told by the NICU Dr they usually dont like to crib them til around 4 lbs but her isolette wouldnt go down any further. So my assumption is she got a bit of heat stroke. She was dehydrated and didnt pee for 13 hours! I was just getting ready to call the Dr and she peed! So I brought that up and she said obviously keep the vest on as you can, but if your outside playing etc ditch it. We might try to kinesio tape her muscles that she needs help with :/ Ya blah....Or we can try to double swim suit her, as long as the suits are tight, or we can TRY to find/order a wet suit that she would wear to scub dive. Those are cooler, I guess. A few Ideas. I have quite a few suggestions thrown at me that I have to try and see whats works.

After everything, I forgot to ask about her tight wrists :/ Next time I guess.

Finally, I asked for an official diagnosis from a doctor that can put it in writing. I had asked her therapists what they "thought" she may have. I got Hemiplegic possibly going to diplegic. Well she ended up as a diplegic hypotonic Cerebral Palsy. Here are the definitions of each I found online:

Hemiplegia is a form of cerebral palsy that affects one arm and leg on the same side of the body. For most children with hemiplegia the arm is more involved than the leg and the end of the limbs have more problems. The wrist and hand have more physical problems than the shoulder, with the elbow literally somewhere in the middle. Similarly, the ankle and foot will exhibit more difficulties than the knee.

Diplegia is a form of CP primarily affecting the legs. Most children with CP will also have some problem with their arms but with Diplegia they are less involved and less severe. Most children with diplegia have spasticity, and have difficulty with balance and coordination. Delayed muscle growth and spasticity cause their leg muscles to be short, and as a result the range of motion can decrease as a child grows and the joints become stiff. The feet and ankles present more problems than the knees due to a short tight Achilles tendon, which can lead to toe walking. There is risk that the hips may become dislocated and for this reason, the child’s hips must be closely monitored.

The link for Hypotonic if you would like to read it....
http://www.cerebralpalsylawdoctor.com/cerebral-palsy/types/hypotonic/

This is the first time We've heard hypotonic for Brielle. But reading it makes perfect sense. She sits very "lazy"ish. When she sits she sits reclined and never straight up and down. Which is why she is in her spio vest.

So all in all a pretty informative appointment. April 17th is the day for botox. While I knew it was coming, Lisa warned me too, It still strikes a new cord. I thought we'd have to fight alittle harder to get the botox. I didnt think she'd suggest it within the first 5 minutes of just observing her. After she "tried" to stretch her and seen how tight she is she then said we'd try the botox twice and if it works then we will do the phenol which lasts 6 months instead of 3 months. And then to hear an official diagnosis of diplagic hypotonic CP, definately got the tears rolling. As a mother, you want the best for your child. I know I've said this over and over, but its true. When your child has a runny nose or a common cold, you wish you could take it from them and do anything to get them better. With CP, I cant. I cant do anything outside of my power to help her. And I dont feel like its enough. I dont feel like things are moving fast enough. Botox is less than a month away and I dont feel like its soon enough. She did offer to me (After I Told her ASAP!!!) that I could drive to west bend to get it, but my therapist is out on medical leave and it just didnt make sense to do it earlier than the 17th. Brielles therapy needs will be increased to twice a month to weekly visits now. I need to step up my stretching requirements and orthodics will need to be worn more often. Lets just say, this better work!! This is Brielles future we are talking! This HAS to work!!!

This ones for Auntie Em........

My sister informed that once again, Its been soooo long! Im becoming a bad blogger!! Little peanut is keeping us busy! As well as this 70 degree weather in MARCH! Love love love!!

Good day for a blog. Since the last few days Ive been feeling defeated. Tuesday, we have our 6 month appointment with Brielle pediatric rehab and medicine Dr. At this appointment we are going to question botox. Brielles physical therapist, Lisa, who I absolutely adore and trust has brought it up and after I researched it to death, I feel it is a good thing to discuss and possibly go thru with. I have a whole page of questions and concerns. Side effects, how often she will need, will she need to be casted, What if it doesnt work?? Another concern I have is her wrists. Brielle can not turn her hand over to have her palm up. This has been an on going issue for awhile. I took a break from it and recently revisited my concern and Lisa agreed with me that she is tight! UGH! It feels like she is getting tighter and tighter monthly. Its gut wrenching to watch. Her step is getting higher to the point that if shes been walking for awhile or too fast she will almost hop on her left foot. Lisa calls is a "gallop." She walks worse when she has her orthodics on. While I understand that her orthodics are NOT to help her walk BETTER, they are to help straighten out her ankles that turn inwards, Its hard to see. I dont feel they are helping and I will be bringing it up. The next concern is how clumsy she has gotten. She falls ALOT, orthodics or not. Lisa mentioned to me a few months ago, that we needed to keep her loose (FAIL) and we need to keep her confident (FAIL). She has full cognitive skills of a 2 year old. She has an attitude. And she WILL tell you if she is not doing something or if she is going to do something come hell or high water, this girl WILL do it! So we need to keep her spirits up because she knows that she can walk and next she will want to run. If she cant she is going to become frustrated and it isnt going to be pretty. Well we've hit that bump. It happened. She has been falling alot in the last week and she throws a fit each and everytime. I try to be up beat and "O Boom! Youre fine!! stand up! Come on! Lets go!" But shes feeling defeated as well. Shes frustrated. She had enough. I feel her pain. Im really hoping to get answers on Tuesday. I feel like we've hit a rock with her. Shes getting tighter as the months go on and she WILL NOT let me stretch her for anything! Shes too little to understand that she NEEDS to stretch. Shes too little to reason with. Next year, she will understand but that doesnt do us any good today. Getting her to stretch is pure hell. And Im as over it as she is. Shitty attitude, I know! But fighting with this child is not fun! She is a fighter! She is determined! She wont do what she doesnt want to! I keep telling myself, If she didnt have this attitude, She wouldnt be here! But geez louise girl, give your mama a break! Its okay to back off alittle!!

On a good note, Brielle is a hoot! She makes me laugh everyday, several times a day! Today in the car, she was so tired she was going "aaaaahhhhh aaahhhh" but with her eyes closed. This child protests naps daily! To get a nap in is pure hell too! :) And Ill be sure to tell this child when she is 15 and wants to sleep all day that she blew her chance when she was 2!!
Brielle has about 20 words. She says Boo, Bye, dog, please, bird, dad, drink, hi, done, get, go, down, choo choo, cracker, deer, car, pew, poop, no, yes, cheese, hmm Theres more, but Im drawing a blank. She is such a chatterbox! She will point her one finger at you and tell you a whole story. No clue what she just said, but its cute as heck!
she signs please, more, done, eat, sleep, drink, thank you. She knows her belly, head, eye, nose, and her famous stinky toes!
When asked to "pull my finger" she will make a tooting noise with her mouth. Thats been the highlight to everyone around Brielle.
She loves to go outside now that its finally nice and ride her four wheeler and she would just walk up and down the sidewalk all day long if you'd let her. She hates the swings at the park and will tolerate the slides. Otherwise, she'd rather just walk around. This child just wants to walk!! Walk from the car into the store, thru the store, and back to the car and into the house. She wants to push the cart, not ride in the cart. And she is persistant! Ask Gma Kris who met us at Gordmans in the middle of a complete meltdown because I put her in the cart! Oye! Id say her lungs are doing pretty good!! Tear ducts work as well!
We ask Brielle is she is tired and wants to go upstairs. She will either tell me no and keep playing or she will grab her beloved pink camo dog and head to the babygate. She will try to push the button to release the gate and then she will climb the set of stairs and go to her crib. But then she will fight her nap. Im at a loss for that one!! Its not like I force her to go to bed. I simply ask and she leads the way and then proceeds to have a melt down. Im stumpfed!
Brielle has been pooping on the big girl potty since about Novememberish. My sister sat her daughter on the toilet whos a bit younger than Brielle. I thought hmm and tried it. She took a liking to it and its just kept going. She went in the bathroom the other night when Josh was in there putting stuff away yelling "Poop poop" Josh kept telling her to get out. I told him what she was trying to tell him so he sat her on the potty and sure enough. She is sure learning what she needs/wants to do. She brought her jacket to me the other day (as shes just in a diaper). She will go in the pantry and bring me snacks. She knows when she wants a drink. Shes definately a smart little girl. Her latest is mom reading Brown Bear Brown Bear what do you see to her 8 times a day. The only book that child will sit thru! So keep on reading!!

Ill try to be a good blogger and update after Tuesdays appointment!! :)