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Wednesday, August 22, 2012

Appointments Appointments!

The last several weeks, Between Brielle and myself we have been averaging 5-7 appointments a week! Its quite exhausting! But well worth it in the end when you see the progress it is having on Brielle!

Brielle had her 2 year post laser eye surgery check up on Monday. We were facing a potential tear duct surgery, but it resolved on its own!!! YAY! Her retinas look great from the surgery. And once again, she got the rockstar stamp from her doctor! He said that as fast as her ROP progressed and she needed the laser surgery so fast (They did it on a saturday as an emergency) that he is really really surprised she is not in glasses for near sightedness. Ill take it! Be as surprised as you want Doc!! We will go back in April to have a dialated appointment which is more invasive so to speak as they dilate her eyes and really really look in them as where Monday I just held her still and he just shined the light and looked thru his magnifying glasses into her eye. We know she can see. She spots things that Josh and I have to look for. Its incredible and Im so grateful her eyes are doing so well with all the oxygen she was on, the laser surgery, and how premature she was!

Brielle was fitted for new orthodics last week. Her therapist was up in the air as far as to keep her with her SMO on the right and her DAFO on the left. SMO is short and covers her ankle, DAFO is up the mid of her calf and seperates as she walks so she doesnt have to work as hard to walk. She had debated about putting her in both SMOs as that is our goal long term. She was worried however, because she really needs both the SMO and DAFO for her left as she varies day to day. One day her ankle is so flippn tight she tip toes and or drag her toe on the ground and the next day she looks great but her hamstring fires to quick so she is high stepping. She really does change day to day! So we had Peter come to fit her for the new orthodics and he watched her walk and stretched her, well TRIED to stretch her, and said her left was SO SO SO SO SO tight it was crazy. So him and I talked about some options and the one we chose was to go with the DAFO but made alittle higher than her one now, which Im not crazy about, but glad winters coming! And to attach a night stretch dohicky to it so that it stretches her toes straight in the air and back to give her ankle and he calf a stretch the entire night she sleeps. NOW, I am extremely excited that she will be getting this incredible stretch that she will NOT let me do to her! But I am skeptical that she will not sleep with it and tolerate it. All we can do is try and hope for the best. I just have a bad feeling it is going to be a nightmare! This is a child who HATES to wear shoes/socks and everytime she gets in her carseat things she needs to shed her shoes immediately. I hope she rolls with the punches and it doesnt bother her! It is really going to help her if she will tolerate it! Even if she gives me half a night Id take it!!

We have been battling a chronic wheeze with Brielle. It all started when she got pneumonia about a month ago. We've been to the doctor almost weekly and nothing is working. Her doctor now has her on singular. Our battle is getting it in her! I opted for the chewable tablet as she has learned to spit and spits the liquid out on us! Well now she takes one bite of the tablet and throws it to the dogs. Oye! So then we tried to crush it and hide it, well shes to smart and pushes it away and says "I dont like it." So this is my new past time, trying to hide all her meds in her food so they get in her one way or another! Not an easy feat when she is pretty much watching for any trace of medicine in her food!

Apple....Apple is head down and giving me incredible hip pain galore! When I went in for my 31 week check she was measuring right on 31 weeks. Now at 33 weeks she is measuring 35 weeks. Her heart rate was 128 which is low compared to her normal 150-160's. But still within normal limits. So my doctor is ordering a growth ultrasound to see how big she is and if she is growing too rapidly as the last jump was unexpected. I was alittle nervous, because I had asked around 24 weeks when my next Ultrasound would be and she said I would not have another unless something was wrong with baby. So when she said ultrasound my head started to spin. But from what Ive read and from talking to others, its just to make sure she isnt growing to quickly and I can still do a vaginal birth etc. So until the ultrasound, remain chill! Josh and I went and got all Brielles NB clothes Sunday so I could start working on them. I just pulled the first load from the dryer and I cant belive how big Brielle has gotten. Shes still alittle peanut, but man looking at these New born clothes really puts it into perspective how small she was at one point. And she didnt even fit in preemie clothes in the beginning. These kids grow too dang fast! I am grateful to be a stay at home mom and watch her grow. I can not imagine missing all the stuff she does. But I live by the saying "You need to be apart of your childs memories to make memories" If your not around and miss all the stuff they do and experience what do you have left? Nothing but looking back when they are 14 and want nothing to do with you lol With that being said, Apple is going to be here in no time! 4 weeks and she is full term already. EEEKKS! I really dont know where this pregnancy has gone! Its flew by all so fast!!!

Saturday, August 4, 2012

Just a small Update

We are 18 days post botox and baclofen. After ALOT of trial and error of dosages on the baclofen, I think I have found the one that works for her for now. On top of it, Brielle got walking pneumonia and a sinus infection a week later. And she even shared it with mommy and daddy! The steroids she was on made her all kiddywhampus and sleep was non existant. It was a miserable week! She was terrified to sleep in her crib, so Josh spent many hours in the rocker, rocking her so she would get some ZZzzz's and even slept on the living room floor and gave his little girl the couch so we could all get some sleep. All Star Dad! Now that she is feeling better we have hit the stretching and working hard core. She has out grown her orthodics so I have a call in to get new ones! Her hamstrings have GREAT length which I am excited about, but trying not to get to crazy about it since last time wore off after 3 weeks. Im hoping the combo of baclofen and botox will help it last longer. She changes so much day to day. One day her ankles are loose and looking great and shes getting her heel flat on the floor while walking, but still high stepping. The next day she is tight as an ox and walking on her toe and dragging her foot. But her PT, Lisa, is so proud of how the botox and baclofen have already helped her that I hope we keep going in this direction!!

I am so pleased to say that we have left hand isolation of her pointer finger!!!! For the first time ever, she will point and plays "touch" on my phone with her left pointer finger with out me pushing the other 4 fingers down or even telling her to get that finger out!!! I down loaded an app on my found that she uses her finger to point and pop balloons or balls. She LOVES the game and I truly believe that it has helped her get the isolation down pat! This is one of many reasons I would LOVE to buy her an Ipad. They are proven to help CP kids and there are so many helpful apps for CP kids that would help her even further. She has had the finger down pat for over 4 days now and I cant stop smiling everytime!! Big improvement from her using her thumb on that hand or pointing with all 4 fingers! So proud!

As far as "Apple", I am 31 Weeks Monday! I had to take Brielle to Dr Rink as it was her doctors day off, and she was asking me how far I was etc etc. We were talking back and forth and she asked me what I was going to do with a baby over 2 pounds. I said "I dont know, Wait, you mean I get to take this baby home with me from the hospital? They dont keep her for 3 months???" She just laughed. Its definately a whole new ball game. And Im loving every minute of it. She is SO SO SO active! Josh finally got to feel her last week. He wasnt sure it was her until I told him if he didnt feel that kick he was crazy. I think today she was having a dance off with my organs. Loving all the water and swimming all around!! Grow baby grow!

Brielle thinks that her sister is a chair. She will come up on the couch and climb on me and turn around and plunk her little butt right on top of my stomach and watch TV all snuggly and cozy. Wait til her sister starts to kick her off!!