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Friday, July 20, 2012

3 steps forward.....2 steps back

Day 3 of oral Baclofen. Oral baclofen helps by reducing spasticity and improving function in children with cerebral palsy. Brielle has been showing signs of having muscle spasms over the last 2-3 months. Very possible shes had them longer, but starting to verbalize now that she is in pain, which is nice for us that she can help us out and tell us what is wrong! The baclofen helps relax the stiff muscles and in turn reduces tightness and tone and also eleviates the spasms she is having. We were giving her 5mg twice daily. At her therapy session yesterday, she had just woken from a 2 hour 15 min nap, that I had to wake her from for her session and she was still so sleepy she couldnt wake up. I raised the concern to her therapist that all day yesterday she was falling alot! And she would fall hard. She used to be able to catch herself and put her arm down to catch her or slow herself to a graceful fall and now it was hard straight to the ground. And of course, Brielle was getting flat out pissed off and alot of crying was happening! She got to the point where she just didnt want to walk and wanted to always be in our arms carried everywhere. Not like her at all. This girl loves to walk on her own. So red flag for sure! Her therapist explained that she has learned how to walk with stiff legs. She doesnt know any different. NOW we are relaxing her muscles with botox and the baclofen and she has to pretty much learn how to walk on new muscles all over. Try telling a 2 year old to be patient and work on that!! Today I am giving her 2.5mg of Baclofen twice a day and instead of morning and afternoon like we were doing, I am going to do mid morning and before dinner. She is just getting to tired and zombish to give them to her at 730 and 1230 ish. I want to space them out a bit. Her doctor did tell me that we are going to have to play with the dose and times she gets the pills. Its just really hard to watch your child struggle and become so frustrated. I dont think the 3 steps forward 2 steps back feeling from the NICU ever leaves with a micropreemie. And then add CP on top of micropreemie....... 

Tuesday, July 17, 2012

Botox take 2

Brielle had her second botox appointment today. I was alittle on edge, because I didnt know what they were thinking or what was going to happen. Recap...In April when she had her first botox, it lasted 3 weeks. While we dont believe it did anything for her hamstrings/legs, we do think it helped her get her midline and posture in check and stronger. She seems to be not pulling her arm back and winging as much when she walks as she was prebotox. As far as her legs, we all agree it did diddly squat. So with all that checked out the Dr said that she gave Brielle the minimum dosage for her weight because she is such a peanut. She didnt want to overdose her (Thank you very much) and she didnt want to give her too much if her body wasnt going to react well. Its like any other medicine, you have to make sure the child tolerates it well and isnt allergic etc. Our wonderful physcial therapist, Lisa, came along to give her suggestions as she is the one that works with Brielle weekly. I was grateful as I wouldnt know what to really tell Dr Morberg. They conversed and Dr Morberg did some stretcing exercises with Brielle and then discussed with me. Basically our options were to give botox in a few different locations because last time it was just given in her hamstrings and obviously she needed more. She explained to me that in alot of kids with high tone, Brielle, if you give it in one location the stiffness tends to go up or down. Ex. She gave it in her hamstring...upper thigh...so the stiffness stayed lower in her calf and ankles. Which makes total sense since she is toe walking and dragging her left toes. She also explained that Brielle is a prime candidate for Phenol. Phenol is a deeper version of botox. It lasts 6 months instead of 3. But for phenol to be administered she would have to be put to sleep for 10 minutes. Because she is walking and self feeding etc, we all agree this is not the right option for us at this time. I then brought up her thoughts on the oral baclofen I have mentioned before. I was quite surprised at her response. She LOVES oral baclofen for these kiddos and highly recommends it. She said she works with it alot! I asked if it botox vs baclofen or if they work well together and she suggested to have them work together. So thats what we are trying. Brielle got botox in her hamstrings and her calfs. Tomorrow we will start the baclofen. The only thing is, the baclofen is a pill. It doesnt come in liquid form. So getting a 2 year old to down a pill should be pretty interesting. I can crush it, but if anyone has tried to feed this child, they will totally get where Im going with this. She is picky! She wont eat applesauce, yogurt (USED to LOVE), pudding (seriously!?!?! What kid doesnt?). I have to get creative here! I hope the baclofen and botox combined do the trick!! We should know in about 2 weeks or so! Fingers crossed!

As far as my infection...I am on the antibiotics and I feel pretty confident that they have stopped/slowed the infection! Fri/Sat were kinda scary, but Sunday I felt completely normal. Almost symptom free! I am so grateful that it was caught in time and the pills kicked in right away! It was quite the emotional rollercoaster on Thursday when the news came in it was a positive test. But whatever god throws at us, we will take head on and jump right thru. Officially in the third trimester, I feel pretty good this rainbow baby is sticking til October!

Thursday, July 12, 2012


My emotions are running extremely high. Monday I had some weird things going on and seen my doctor on Tuesday. I ran them by her and she was concerned so she ran several tests to figure out what was going on. Since she was off on Wed I just got the phone call today. Tests came back positive for BV infection. The same infection that broke my water with Ayden and Brielle. The same infection that took my sons life. I am so pissed off this happened yet again. I have never gotten this infection while NOT pregnant so why do I keep getting it while pregnant? How can this seriously happen to a person twice??? I just dont understand gods ways! Im just glad I am alot further along that I was with the twins. God forbid something would happen this time, we have a much better chance. Lets just hope we this one doesnt spread as fast as the last time. As Im trying really hard to look back and think back I believe the time frame is pretty close to when my water broke and when we found out and when I suspected something wrong. Please let me be wrong. Prayers needed water sac stays tightly sealed please!!

Wednesday, July 11, 2012

Therapy therapy. Just a daily routine in this house!

Yesterday Brielle brought me one of her toys that I use often to convince her to let me stretch her. She came running to me with it and was yelling "I wanna stretch, I wanna stretch." Now mind you, she doesnt want to actually stretch, but she associates the toy with stretching. She just wanted to play with it. So I let her. But it made me sad that she can put those two things together. A child shouldnt have to associate her fun toys with stretching and therapy. I also have used her dress up beads and put her between my legs and extend her legs out and put the beads past her toys and have her stretch for them. Well she doesnt play with them anymore, probably because when she does, I make her stretch. Not what I was aiming for, but what the outcome has come to. The toys seemed like a good way to try to pursade a 2 year old to stretch and get the mission accomplished but Im thinking its started to backfire. I am thinking now I will need to put aside certain therapy toys and leave her favorites for just fun play.

Next Tuesday is botox day. I have so many mixed emotions. I dont know if I want to inject her with botox if it isnt going to work. I dont NOT want to give it another try because what if it works? Maybe she was going thru a growth spurt and the timing was just wrong? This time will be different? Maybe they needed several more locations other than her hamstrings?? PT is now coming with me to this appointment to put in her opinion of where the botox should go. She wants the hamstrings, ankles, and abductors injected. That seems like a lot to me, but when you do look at all 3 locations and how she is walking, falling, standing, stepping, It really does make sense to do all 3. I have also questioned the use of oral baclofen. I will be throwing that out to her rehab Dr on Tuesday. The only negative to that, is it is a whole body relaxant and her posture is already not ideal, so it will make it that much worse. And will she do Botox and Baclofen or one or the other? Or do we totally forget botox and put her under for phenol which is deeper and goes straight to the precise area that needs help??? AHHH so many questions!! I never know if Im doing the right thing or not. Josh tries to hard to be in the mix and help with decisions but he just isnt here to hear all the suggestions and what is really going on, so to help make a decision is like making it blind. I talk to him and he always says he trusts what I think but sometimes I dont know what to think. I like to think Im making the best educated decision but I question it. Alot. And then when it doesnt work, like her last botox didnt, I take it pretty hard.

Baby 'Apple' is growing.  I was 27 weeks on Monday. I am measuring 28.5 weeks which is within normal range. Heart beat is 150 and strong! She is moving around like crazy! Still trying to get Josh to be able to feel her. I dont know sometimes how he cant feel some kicks. I feel like shes trying to break loose sometimes! Shes a wild child! I never felt the twins as my placenta was in the front so it blocked all the movements. This placenta is in the back so I feel her quite frequent. She Still is not named. But one day she will be. hehe And I was just informed that she doesnt have to be named til she is a year old. Whew! I thought we had to have her named to leave the hospital. lol
It is definately hard to get "excited" and things ready for this one. While everything is going way to good, that is just it! Things are going way to good to be true! I keep waiting for that Dr appt to happen where she tells me something is wrong. I cross my fingers every day it doesnt. It will be so different to have a baby in the room with us. And to go home with a baby the day I leave. I really look forward to that and dont want that dream crushed. Its always in the back of my head, but for now, I put leaving with a baby top priority! Even tho we dont have a crib yet for the new baby, she will have a place to call home :) We may be doing some shopping on the way home from the hospital lol.